Tilly Moments

My Lived Experience of the Covid Epidemic

2023-10-25T03:11:00.005-07:00

My Lived Experience of the COVID Epidemic

Post viral infections are nothing new, so why no data, understanding of the biomedical research or concern over PPE? Why no research into ME/cfs especially now with Long Covid who fall into the PEM and ME diagnosis.

Being a carer of a severely effected young person from the age of 8 who is now 18, I have had to fight to be heard every second of every day. I have had to find how to support and care for my son without proper data or research. I know more about ME and PEM than that of the professionals I meet and yet I am silenced. Mine and millions of others lived experience can tell us so much about post viral disease and the consequences of not giving the proper understanding and treatment. How misinformation and disinformation by professionals, journalists and politicians have impacted in such an egregious way.

Should the Covid Enquiry demand a full enquiry into the history of failure, especially of the PACE trial involvement, which allowed in opinion and bias against the science and evidence of the lived experience of those who have had to live alone with a chronic and devastating post viral disability? We should examine why Sir Mark Walport and others have not taken down the pace trial and other such harmful papers.

The impact on me, my family, and my son of the Covid epidemic is beyond words. First trauma of knowing what was about to happen, the lack of professionals to meet the needs of those left with ME and PEM. I often wrote “my heart fills with shame and tears” because I knew what was to come. The inappropriate research and rehabilitation centres, the false accusations on parent carers like me. The misuse of funds the denial of education and all the trauma of waking up to the next fight against injustice, discrimination, scrutiny and misinformation or disinformation from those we should trust.

If the Inquiry into the status of cfs/ME and research into the causes and treatment, published in 2006 had been followed up with proper long-term data; including autopsy and biomedical research needs to be discussed openly now? Would we or should we have been in a better place to fight covid deaths, support and save those with Covid damage and Long Covid. If the PACE trial had been thoroughly reviewed by an independent inquiry after the court case, what lessons could have been learnt and what still could be learnt.

The ME community was fighting in October 2021 the biopsychosocial model holding on to the status quo in the ME pathway. This was extraordinary in a pandemic with many coming down with ME and PEM with no symptoms or hospital admissions. Peter Todd was preparing legal aid for a young man to force NICE to follow procedure and release the New Guidelines.

With the Will Quince review now underway into ME, this review will not change the bias or the disregard to those devastated by this pandemic. Without taking down the PACE trial no clear understanding of ME and PEM will be gained. This Governments support to Functional Neurological Disorder introducing IAPT and Medically Unexplained Symptoms with many in the medical profession stating NICE is just a guideline, those that could be saved from long term disability and be able to recover, is going to be taken away from them, as it was with my son 10 years ago.

We need to stop the ability of bias opinion over science, excluding evidence quoting the PACE trial to do so. We need to combine the knowledge of postmortem, data and lived experience to be given the respect so often talked about but not acted upon.

For me and the millions missing this is the story of Covid, the trauma and disregard of the lived experience and to the known medical facts.

How is the PEM 3 Days in

2023-05-26T07:40:00.004-07:00

How is the PEM going after the exam, well it normally takes 4 days for Angus to experience the full impact of his Post Exertional Malaise (PEM). PEM simply means an increase in symptoms and a decrease in ability to be active, things like listening and reading are affected when in a PEM state. His exam was on 23^rd May 2023, this was written on the 26^th.

I want you to come along on the journey with me. There are 101 reasons why but taking you with us as we journey through the impact of PEM, I hope you will learn something useful and understand us more.

So far, he has been fooling around the house with the extra adrenalin, talking to his mates and watching a movie on his laptop with them on Face Time. I’m going to try to tell you of the double edge sword of these moments. After 10 years of living through the complex cycle of PEM, I hold on to those moments of who he really is and marvel at the young man who has had to learn to wear expertly the mask of normality.

I have spent most of the time giggling at his antics, like a ghostly entity that swoons around the house in a cloud of contented energy, silent and unseen, as he roams outside and looks in at the windows with funny and googly faces. I have learnt over the time of his illness that these moments of normal life, is to be savored. Not hoped for with by every fiber in my body, as I once did because the pain of the let down as he progressively slips into pain and suffering of PEM, is too much for my heart to take.

Sadly, with every inch of mindfulness I try to possess so that I can curb this innate response to my child’s contented ownership of time, to shout out that recovery is here. I never can use that mask of mindfulness and hide behind positivity because that positivity has broken me many times before.

Living with someone who has severe PEM is like living with someone who has periodic Alzheimer’s. You can’t ask questions because they get lost, they slip through the gaps in the brain forged by dysregulation of every system in his body. You have to second guess what is needed, wanted, or the question they need answering.

Angus uses FaceTime to ask for help when his pain is bad, and his heart rate is bouncing around his chest like an excited monkey.

It goes something like this he calls me on FaceTime.

Me “you ok”

Angus “you’re talking too loud”

Me “sorry”

Angus “what did you want mum?”

Me “you rang me”

With frustration he ends the call only to reconnect a couple of seconds later. By this time, I figured that he needs water, it could be food but I’m guessing it is water.

I answer with a softer voice “would you like me to bring up water?”

Angus “what?”

Me “Water?” at this point, less words means a better outcome”.

Angus “Yes”

It is a weird experience when the person you know changes in a flash from someone who is verbally articulate, to one that is unable to communicate a simple need such as - needing water. It comes with so much frustration from us both, but it always makes me giggle a little. How funny our existence is now.

I take the water up and then lay by him in bed. I feel there is something going on that I had not picked up and he needed time to get his brain to work out what it was. He drank 2-3 glasses of water straight down; I could see the dry lips already taking shape. He then took me through a question he had in the exam. He spoke fast and in a fragmented way. It was like being fired at by one of those tennis ball flinger things, with someone changing the direction and speed. Then it happened, the full flow of what I can only describe as intelligence on another level, coherent and concise. I know at this point I cannot interrupt him or ask questions, but to keep up as best as I can because he will be giving me a test at the end of it all.

He took another gulp of water and asked, “Well what do you think? Did I do alright on that question”.

My first thought was, if you answered as you had in the last bit of the information he just articulated then yep; if only I knew what the question was.. However, if it was like the first part of your explanation then I have no idea. What I actually said was “I’m not an examiner but it sounded amazing to me”.

“Not helpful mum”.

“I know but it’s the best I can do”. It’s his laugh that has me in a contented lull of life. He knows me better than I know myself, I think.

He then informed me he needed to space out and chill listening to audible, his only way of switching off his brain a little, to help with energy saving.

“Where are your ear buds I asked”.

“Under the bed I’ll get them in a minute”.

I know this would be too much for him, I looked under the bed and there they were at the furthest point, against a wall. I got the grabber thing we use as I am short, and our cupboards are tall it is a very useful tool for many occasions.

I have the most horrendous uncontrollable laugh ever possessed as a giggle morphed in to a belly laugh. There I was stuck by both my north and south appendages, under a bed with a grabber thing, trying hard to fling out or grab 2 very small and slippery earbuds. We both ended in hysterics.

Obviously, I did get unstuck in the end and yes Angus did video my heroic effort. A kept moment that I will constantly look back on. However. Having fun and being normal can make you feel a fraud. You are either ill or not, there is no area in between where life lurks a little.

I know we should grab every occasion to laugh as hard as we can, we deserve it after all. But laughing never ever makes up for the loss we face on a daily basis, nor does it stop me or Angus from having to wear a normal mask because the public and medical fraternity demand it and neither can they deal with the reality of chronically illness.

To constantly be positive is positively harmful though and although there is no crime in having fun and laughing spontaneously society can make you feel as if you are chronically ill you have to prove it every second of every day. More importantly is that it is OK to show the world what it is to live with illness that takes your life, dreams away and for society to accept it.

2023-05-24T01:28:00.002-07:00

Angus sat 2^nd part of his GCSE exam 23^rd May 2023. He is 18 and has only managed to do 2 others, this will be his 3^rd. His tutor has always said that he is bright enough to go to uni and have good grades in A level to support this. How must it feel to him to be doing easier work than his ability show he is capable of.

The frustration of not being able to recharge his body for proper quality learning, with a good basis of revision, grows ever stronger as his energy seeps through his brain like sand through a time piece. His fear is that if this happens in an exam, that loss of time as his brain crashes will be such a waste of his health. The sacrifice he has made is immense. There was once a system where these problems were understood and instead of exam work you could put in your work through the year. There is no such level playing field in education for disabled young people now. We seem to have gone backwards in our understanding of need.

He has had no medical support, no recognition for his deep PEM and how that is a danger to his health or looking for the treatments known to alleviate symptoms to safeguard his health. The funding for care is not provided by the government to GPs, so why should doctors find the funds for his care out of their pocket?

This government are only prepared to promote ME as mental health condition. They have funded psychological research and treatments only. I wonder how that impacts on Angus’s view on society. Will this ever change with any party?

For me the fear of having nowhere to turn when his physical health declines, as he pushes to do work is frightening. It is intensified with knowing his physical disease is denied, so when medical attention is needed, he is only looked at as an anxiety driven recluse of his own choosing. I shudder as I know how that impacts on him as a person. Discrimination in medical history is there for all to see.

The extra mental energy he has been using; little as it is, has activated all of the disregulations ME sufferers know only too well. It’s not just the increase in pain that impacts him, it is the fact he no longer can think coherently, and the world turns on him because of his disease.

We have no way of knowing how long this increase in severity will last or if he will ever recover to his former abilities. It is understood by millions of those that have ME and now Long Covid but is not recognised in the GP surgeries around the UK or the CFS clinics. How does that happen in 2023 when we have known since the 1800s what this disease is. The idea that we are progressive in medicine is so wrong and that Mental Health is understood is a misnomer, because if they determine ME is mental health issue, they have no understanding at all.

My thoughts are with everyone who are in the process of taking exams, be kind to yourself and you have big marshmallow hugs from me.

To those with ME, PEM and Long Covid you are true heroes and the results do not show your real talent, but I for one recognise your ability to shine through adversity and I am in awe of you all.

Dear Laurie Taylor and the BBC

2023-01-13T05:08:00.005-08:00

Dear Laurie Taylor,

I have listened to your show for many years. Working at home enables me to prepare a meal for the family at the time your show comes on. It is thought provoking and on the whole balanced on the side of the professional that should know better than the - put down and silenced public.

After listening to your weekly show on Wednesday 4^th January 2023, I thought the time has come to write in and explain the reality of social conditioning; with its foundation in the belief that the patient is to blame, the marketing and gatekeeping of wellness-based healthcare by a few that have the ear of the Government and the DWP. The connection here between psychiatry, the pace trial and health is discussed by Brian Hughes (hughes, 2021), the damage of the Mental Health practitioners who are taught Medically Unexplained Symptoms (MUS) but don’t understand the autoimmune response after viral infections. Jackson and Kroenke discuss the issue of not looking further than MUS (Jackson & Kroenke, 2006) after reading this look at the list of autoimmune diseases and the complications of not addressing or understanding post viral diseases, which needs to be discussed on your program in Covid times.

The impact on mental health and autoimmune is well known the inflamed brain is also well known but ignored Edward Bullmore discusses this in his book (Bullmore, 2018). Edward Bullmore MB PHD FRCP FMedSci trained in medicine at the university of Oxford and St Bartholomew’s Hospital, London; then in psychiatry at the Bethlem Royal and Maudsley Hospital who has just published a new paper (lynall , et al., 2022) on the Genetic variants associated with psychiatric disorders are enriched at epigenetically active sites in lymphoid cells.

To understanding complexities of post viral conditions such as Long Covid and ME and the work to dismiss the long-term impacts on health and mental wellbeing, you need to understand the ever-changing names such as Functional Neurological Disorders; once called conversion disorder or Medically Unexplained Syndrome which again was once called somatization disorder, and how these impacts on the NHS and care. We should know enough about infections by now to understand the damage done. What has AIDS, Celiac, Migraines, rheumatoid Arthritis, Stomach Ulcers, and diabetes taught us?

You once had a program on the placebo effect, where you called people like me activists, you also used the term cfs another way of hiding the disease that Myalgic Encephalomyelitis (ME) is known to be. You used this terminology again as some sort of derogatory label on Wednesday’s program, a put down, which I find offensive.

I wanted to explain why a difference of opinion in science, does not mean the patient/advocate or as you put it activists are wrong. The harm of demanding mental health over physical disease, has been written down over hundreds of years. Science should be based on “prove you are wrong and if you can’t then you must be right”. To use this in its proper context, first you must explore all the facts and possibilities and not rely on the foundation of opinion without the lived experience, which mental health has done with ME.

First and foremost, the derogatory term of “activist” was used on women suffragettes. Since this time women have been fighting against mental health disorders to get the right information and the right healthcare - just look at heart attacks and endometriosis with long history of social conditioning that women have “mental liabilities”.

The word activist has been used on advocates like me, who have made changes for those with autism that were put and still are in asylums or as we now know them as homes, and those who suffered from many; now known conditions that are still medical unexplained but accepted like diabetes and celiac disease. On Wednesday’s program it was pointed out how women are targeted and held to account by society with the mind, body, wellness beliefs that have infiltrated our healthcare. This impacts women like me, who become mothers that have children who dramatically decline into disability, with no real testing, empathy or understanding - just judgment and opinion that goes against all the science. A nurse who looked back on the Royal Free outbreak takes us through the transference of medically accepted understanding to mental health opinion used for political purposes (Ovenden, 2004) what we saw back then is being repeated again with ME and Covid.

My son was 8 when he had an obvious post viral condition, his blood showed signs that were ignored of celiac disease, which was two years later picked up. However, there were other signs of his body under stress. Instead of testing and looking for physical disease, they gave me their opinion and him CBT and dismissed his physical symptoms as somatic disorder. The harm inflicted on him is there for all to see in his lived experience, the history of medicine, and by thousands of others over decades that have been treated just like my son, starting most notably from the time of the Royal Free outbreak.

This has led to a difficult situation and long-term physical and mental care problems, not only for my son but also to me. Being accused of Fabricating or Inducing Illness (FII) is hard to fight when family courts only have to think you may cause emotional harm in order to take your child away, backed by opinion with no evidence. If a mother restricts a diet for instance, she is automatically assumed guilty even with Drs notes giving clear evidence of autoimmune diseases. Unbelievable you would think but the evidence is all around us. It is written in case studies, in the voices of the young people able to speak out on social media. How many are hidden that are frightened and fighting for the truth.

Please stop using inflammatory words such as activist, when you have not fully understood the problems by alluding to those who are on the internet or on social media. We have seen the damage when a general opinion about misinformation is put out by journalists, professionals, and medical professionals the PACE trial shows this. You did touch on professional misinformation but I feel you need a program to look further into this. We need robust understating of what wellness and mental health is going forward especially when evidence points to the reality spoken by activists like me.

You also stated about abuse on the medical professionals from advocates in the ME community on the program about the placebo program. However, this has been disproven and the last time this accusation was used on the ME community it was by Professor Crawley who held up a poster done by an artist who asked Professor Crawley not to use his work in her TED talk. Fabrication in the medical world it would seem is allowed, but those using science and facts are called FII supporters or activists, so please put the record straight, the facts are here (Lowe, 2017)

Remember science, healthcare providers the government get it wrong and do politicly chose to misinform the public and there is a balance that needs to be met here by respected people like yourself, it is your duty, especially as we go through this difficult pandemic time. Patients can be more informed about their condition than those who say they treat the condition.

As a balance and redress of the issues I have raised around activism, wellness, and healthcare in this letter it would be good to have Brian Hughes who is an academic psychologist and university professor in Galway Ireland. He specialises in stress, health, and the application of psychology to social issues. He has written widely on the psychology of empiricism and of empirically disputable claims especially as they pertain to science, health , medicine and politics. Along with Edward Bullmore MB PHD FRCP FMedSci the balance of our understanding, thinking and wellbeing would be balanced with what we know.

If you could let me know in good time, when this much need balanced program is to be aired, I would be grateful. We all have to take responsibility for the facts of science to protect the population and patients in particular – Health is a balance of diet, social standing, environment, physical and mental impacting on genetics stressors and should be seen as a whole, not in part or bias opinion.

Yours Sincerely

Tina Rodwell

What It Takes To Be A Mother Like ME

2022-05-13T05:08:00.000-07:00

Dear William Quince

As a minster you are required to be available to the general public, not just constituents as some have been led to believe, I do think the link I have used should be made more public.

With regards to this review you must be open to all that are going to be impacted upon. You are the servant of the public and as such have a social responsibility to carry out duties that support and enhance health, care and education through robust data, research and science and not of opinion, theories or for others gain.

You cannot invite parents with lived experience and then cut out their voices and say you have engaged with them. All their comments in writing must be made public and you should have enabled this at the start of the process. As for my letters I will be making them public as I have with regards to the NICE guidelines for ME, Children’s Commissioner, Social Care Reform and Family Court Review.

You must be aware of all the reforms that impact on SEN (Department of Education and Department of Health and Social Care, 2014)[1] and the fact that our educational system has been rundown to fail, with the disregard of the SEND code of practice, so that private enterprises that are also failing to provide adequate education can take over. You also need to have a good grasp on the laws, duties and obligations with regards to EHCPs. This includes health as that is the biggest barrier to education and social care and is now part of the extended powers of which you need to enforce and make sure they are upheld, not just if the Local Authorities decides; as they are not law makers and their actions could constitute discrimination.

My name is Tina Rodwell and I wanted to show you what it takes to be a mother like me and the trauma I go through, but more importantly the trauma caused to my son.

I have a young person that was chronically sick and disabled from the age of 8, he is now 17. He should have been covered by the (GOIV UK Chronically Sick and Disabled Persons Act 1970, 1970) [2]which states that [it shall be the duty of every local authority having functions under section 29 of the National Assistance Act 1948 to inform themselves of the number of person to whom that section applies within their area and of the need for the making by the authority of arrangements under that section for such persons]

So why do we not know how many children, young people and young adults who have ME/cfs and their needs understood and accounted for by Local Authorities or governmental departments so CCG can fund appropriately?

Most if not all parents with children or young people with ME/cfs are not told or informed of their rights given correct diagnosis or supported with an EHCP.

It would seem that I have to cover many ‘professionalisms’; just to make sense of the situation I find myself in. I have to understand the health, care and educational systems in crisis and the laws that bind them together. I should have been informed and barriers taken down, this did not happen and that is unacceptable. This report is only part of my research needed to keep my son safe.

Throughout my child’s illness I have been misinformed, misrepresented and as a result of NHS hidden agenda and tyranny, I feel as if I am the government’s scapegoat. I will explain via each one of the questions I ask of you. However, as you read them I want you to understand the research I have had to do and the effort I have put in which could be recorded on my health records as a Red Flag to Fabricating or inducing illness (Fii) (Royal College of Paediatric and Child Health, 2021)[3] Now linked to Education through the NICE guidelines.

· How can this happen?

· Why is my critical thinking challenged

· Why do GP and paediatrics not support those with hidden disabilities, understand and protect them.

· Why are they so misinformed with chronic and perplexing presentations, when so many conditions are not bio-medically researched such as my son’s condition of ME.

· How many mothers are treated with disrespect and their concerns dismissed? (Clements & Aiello, 2021)[4] we need urgent change to stop what was discovered as Institutional culture of parent-carer blame.

· It is now an Educational requirement to look for Fii but not understand chronic sickness (Jones, 2021)[5] causing barriers to good education and discrimination, a way of gatekeeping.

When I am asked to go on EHCP legal training as a parent, to look up conditions my child has to advocate for them and then asked to give informed consent. How can I then be investigated for Fii under the perplexing presentation from the training of teacher safeguarding. Those safeguarding guidelines - which was supported (Royal College of Paediatric and Child Health, 2021)[6] cause harm. It is recognised that disabled children and young people are more vulnerable to discrimination and abuse or neglect from services and that is unacceptable and why Fii needs a full public enquiry.

The suspicion and accusations are before my son’s disabilities are even considered; not that they ever have been considered without my expertise, input and our lived experience. I want you to remember that; as you work through these questions that every word I write can be held against me through the red flag system of Fii. How that increases my stress and trauma, when I have a very sick child to care for. I have no support and cannot get healthcare for myself; as once again that can be held against me.

What I have suffered; being a mother with a child with complex perplexing health disabilities is at first unbelievable.

· How can this be in 2022.

It is all down to policy impacts and no joined up understanding when Health, Social Care and Education; now so interlinked but separated by reforms and reviews. I hope to address that disjointed issue here with my questions and I hope with your answers.

Furthermore, for mothers with disabilities; as we know they mostly run in families, it seems that they are blamed and disrespected as a parent even more - as if it was their fault they have a disability and should not have children. I have no idea how mothers with any form of disabilities cope and we need research on the trauma caused to parents and especially mothers; as we know their health and care services are misogynistic. We also need that trauma understanding and how to recognise it in our children and how this impacts on their life in the future, when the system does not recognise or dismisses their disabilities.

My trauma of the system however, is nothing compared to that of my courageous son. Sadly we are not alone and no disability; learning or otherwise is untouched by the questions I ask.

The questions we; as parents and the public need answers to and should form your review going forward:

· Is this review going to be fit for purpose or to fit in with an agenda of the Local Authorities and Government’s plans to privatise all health, social services and education, with the use of Fii as an easy accusation to keep parents quiet, as it has for a decade or more?

After all you said you would listen but would not necessarily agree. That to many of us sounds like a caveat and what appears to say to us - the public, is that you will brush over the lived experience and what is needed for children that are different and with needs.

Recent announcements from what we have read and heard shows the minds of ministers was clear - cut services and choice and a carry on with the trauma of blaming parents. No accountability due to a non-blame of the professional culture we live in; but blame the parent (Clements & Aiello, 2021)[7]. In the report it found that most English Children’s Services Authorities operate a ‘one size-fits all’ approach to families –regardless of whether it is a parent carer seeking support for a disabled child or family where the evidence suggests there is be neglect or abuse. The effect of this approach is to create an institutional culture of ‘parent blame’. This then causes the denials of the safeguards we have in place in our laws to protect sick and disabled children and their needs; education or otherwise, is clear for all to see.

· Is this then leading to a system of Conscious incompetence after the review?

2/ Why are our children being failed, why so many children with obvious ill health, disability and educational needs going to tribunal, wasting time, effort and public funds while the Local Authority hold all the power to deny and step over accountability? Even going so far as taking Judicial Reviews away?

Under the Equality Act 2010 (GOV.UK, 2010)[8] it states that the public sector and authorities need to have due regard to the need to –

1. Eliminate unlawful discrimination, harassment and victimisation;

2. Advance equality of opportunity between persons who share a relevant protected characteristic and persons who do not share it.

3. To foster good relations between persons who share a relevant protected characteristic and persons who do not share it.

These Laws should not be opinions or a postcode lottery of Local Authorities and are integral to deliver health, which is imperative to education. This Law gives understanding of disability impacting on educational needs, yet is disregarded at every opportunity. It is your social duty to our young people as citizens, that you uphold the advance to equality in this review.

· Why can’t we keep the retention of good teachers and protect them from being made to carry out bad practice; such as refusing to acknowledge a difficulty and not put forward the legal required Education & Health Care Plans?

Also help protect them from being made to over reach in expertise – the Local Authorities, teachers and education officers are not able to competently diagnose or to assess the young people. However, they are constantly; over decades able to refuse or accept clinical diagnosis of qualified and leading experts in their felid of Health, Educational Psychiatry and Occupational Therapy.

The pathway to disputing a diagnosis is there, it is just not adhered to. All experts involved, private or otherwise have to be a member of the same professional bodies, trained and delivering to the exact same professional standard.

If there are concerns over any professional, in particular a health professional, action must be taken under the “Whistleblowing policies in place”. The relevant professional bodies should be contacted, to see if they have the correct accreditation, licence and followed the correct pathway. The reason we have consultants is to safeguard against unconscious incompetence or conscious incompetence. There must be an understanding that local GPs are generalists, even if they have an interest and must not be permitted to over reach their capacity with regards to accusing mothers or parents of Fii. Sadly many good doctors are targeted when they try to stand up for parents against the accusation of Fii and this sadly also must be acknowledged.

The Robert Frances review was 7 years ago (Sir Frances, 2015),[9] which promised to enable and support those that spoke out, yet we still have a culture of “bully boy tactics” used in Local Authorities to silence the good professionals and support and promote the bad practice. This leads to many leaving the occupations that surround SEND, health and social care.

There are also whistleblowing procedures for education introduced in 2014 (Department of Education, 2014) [10]for maintained schools which are poorly understood.

· What will happen for academies and free schools as the voices of those in education, SENDIAS need to be heard?

Looking across our health and care sectors such as the loss of mothers and babies in maternity settings, are showing us how bad the situation has been and still is for women. They are even blamed for the deaths of their child in childbirth (Bucanan, 2020)[11]. So is every mistake coved up this way - blame the mother.

You have heard how bad mothers and or both parents are treated when they have a child with a disability and you must give a strong voice to them.

No one is disputing diagnosis for some conditions are difficult, duty of candour is hard for professionals but somehow we miss the fact that mothers cannot be held responsible for their or the systems failings. Neither can they be held responsible for the recording of medical information or diagnosis. Symptoms with regards to children are difficult to respond to and they fluctuate, so we need a little more respect for women/mothers and little more critical thinking with regards to safeguarding and Fii in the educational setting or healthcare in general.

4/ We need in place scrutiny of funding.

· How can a former cabinet member for education; who now is a finance portfolio holder at Suffolk County Council, be on the board of directors for the private limited company who provide our children’s education and have such discrimination/lack of understanding in place? (Noble, 2020)[12] Gordon Jones is on the board of directors for Unity Schools Partnership found to be discriminating against a SEN child.

The finances of the schools need scrutiny. (Noble, 2020)[13] The Education chiefs in Suffolk gave a contract for five special educational needs units, when they were aware that the academy trust had breached quality laws by excluding a dyslexic pupil. The breach only come to light in a tribunal.

· How can a school trust; known to exclude children because they are dyslexic, be given further funding for SEND children? Where is the funding going?

These are profit making businesses, who work on ‘less is more’ approach for their business profit margins.

Furthermore, a consultancy firm that apparently saved a council millions of pounds, that over saw significant reduction by slashing council care plans with 414 fewer EHCPs (Schools Week, 2022)[14]. Sadly the national trial to evaluate shows how detrimental this will be as the need for EHCPs are clear and health and social care should now be binding and mandatory to fit in with NHS 10 year plan and provision.

For decades SEND/EHCP needs have never been met (Schools Week, 2022)[15] this one audit and study show this Government has no intention to change this. There has been no longitudinal study with the help of EHCP so the picture is not clear of the harms that have been done by this pilot study.

Stephen Kindom, from the Disabled Children’s Partnership, said “the finding raise concerns the government’s new scheme is “simply a cost-cutting exercise” and will make it even harder for parents to get the support they need for their disabled children. In this report they say “behavioural Science” is about the science.

· I wonder what science they are talking about as it bears no resemblance to the lived experience that you have been hearing. We have a lot to look back on with regards to inappropriate opinions about behaviour, which has been resulting in the downfall of good educational intentions.

So many schools are failing SEND children in Suffolk and this is encouraged it would seem and supported by the Local Authority, MPs and government. Suffolk is not the only one, as private Limited companies are taking over these tasks for SEND with no visible safeguards, transparency or scrutiny.

Once again this Government is going ahead with plans, when clearly there are many issues all around England, with funding and failing schools.

· How can there be a proper fully informed debate in The House of Lords on Academy and Free schools when the information and data is not there or what is there is misleading (House of Lords Livrary , 2022)[16]? It states Among other reforms, the Government proposes to deliver “a fully trust led system with a single regularity approach”. Opportunity for All Education white paper (HM Government Opportunity for all Presented to Parliament by Secretary of State for Education by Command of her Majesty, 2022)[17] how can this happen when there is no level playing field for those with disabilities?

· How can academies and free schools be debated, when most of the troubles in the system are hidden by Local Authorities who are able to put the blame on parents or their child’s bad behaviour.

· Why are mothers targeted with abuse and threats, when asking for support, subjecting our children to trauma that is not recognised or addressed?

The amount of autistic adults now being recognised as such; shows clearly the failure in the system and has proven how wrong Fabricating or inducing illness (Fii) is when parents simply ask for assessments. The trauma on children through their lives and going into adulthood when they are not recognised as who they really are, causes immense trauma and harm. This is why we have discrimination laws so disability or being different is not punished.

· Being Autistic is not a behaviour or bad parenting; it is a different way of taking and using information.

· Nor does it automatically indicate an inability to learn, live in the community, or use information to live semi-independent lives, so why are so many artistic people dying in abusive environments with service providers and taken from loving homes. In this article the MP asks “we need to look at individual responsibility if we’re serious about changing culture.” (BBC News Norfolk Autisum and learning difficulties: MP urges closure of long - term units, 2021)[18].

· The answers are not found or evidenced in the EHCP system; is it now time they should be.

· Nor are the laws we have in place to blame - they are, in theory strong enough and the laws are clear if they are adhered to.

· So what has failed our children over decades?

It is clear it is down to the people who control the system, the way Local Authorities are allowed to gate keep provision and schools delegate responsibility of SEND to the next stage of a child’s education, until it is effectively too late. It is simply a failure of consecutive governments to grasp professional misconduct.

· It is said that ignorance within the law is no defence, so why are so many in the Local Authorities and Government are left ignorant of the laws of the land and why is no one tracking and tackling this issue?

6/ Local authorities play litigation games with the law and children’s lives.

· How are you going to provide data for this bad practice?

· Why are they, not held accountable?

Legal bundles that are incomplete and in a mess to hide the reality, should be thrown out of court as Local Authorities are paid by Government funding to go to tribunals, it is imperative they do so correctly. So many tribunals are unnecessary as clearly EHCPs are needed to support and give advice and why they are not in place needs to be explored and notes put on individual EHCP when discrimination happens to prevent it happening in the future.

Local Authorities should not be held above reproach and allowed to put arrogance and self-protection before the truth. If they are challenged they should question their approach, not accuse the parent. The challenge should be clearly marked and left for clarity and remedies of practice put in place for learning purposes and data collection.

· Why is there no retraining on the Laws in the legal departments of the Local Authorities and Local councils that do not uphold them?

· How are you going to make sure the experiences of parents and young people going forward are properly reported and given respect?

· SEND or family court Judges need to be encouraged to report bad behaviour by Local Authorities, be joined up with Education health and care, demand retraining on the laws. They should not accept these professionals are working in the best interests at all times for the child; as clearly that is not the case.

Clearly the responsibility of safeguarding our children’s health, education and social care is that of the Government. It is Governments duty and social responsibility to keep standards to meet the needs of the people, their communities and business. To choose not to agree to this point is not an option. As Lord Munby while debating the Family Courts being a system in crisis stated the need for research to identify the reasons for the rise in care cases in the article (Stevenson, 2016)[19] needs to be addressed. EHCP show us the needs for support not only in education but also for the chronically sick and disabled. This article clearly shows back then how bad things were, they are much worse now as education can hide failings with unfounded safeguarding concerns. We now need research into how many parents face accusations and family court proceedings because their child is disabled and unrecognised as such, in education and social care.

Governments’ can only safeguard the promises made to our children and their families (HM Government Opportunity for all Presented to Parliament by Secretary of State for Education by Command of her Majesty, 2022)[20]about the support they offer, if the data is there and accurately recorded and all of it taken into account. That data is one of the reasons why EHCPs are integral going forward, as these plans determine the services of CCGs and debates in the House of Lords. These debates can only be constructive if the appropriate professional assessments are done, as set out in the framework of the (Information, advice and Support Program ),[21] the services of which go to make up the CCGs duty under section 3 of the NHS Act 2006 (National Health service Act 2006 Section 3, 2006);[22] leading to the Local Offer and our understanding of the needs of our communities and impacts funding.

10/

· How are you going to introduce the recording of the information of unfounded accusations and the trauma and long term impact of those accusations on the child, for future learning purposes?

The problem here is that there are very few medical professionals that can accommodate disabilities or complex perplexing health conditions. This is due to lack of teaching, research and recoding of harms and misdiagnosis. Hidden disabilities such as with my son; who has Myalgic encephalomyelitis (ME) Ehlers-Danlos Syndrome (EDS) Postural Tachycardia Syndrome (POTS), Mast Cell Activation/histamine intolerance and celiac disease, it is even worse when the research is controversial. If a condition is controversial, parents should not be accused of Fii but the doctors need to be alerted to NICE guidelines and adhere to them.

Due to the safeguarding red flag system, if I look up information about his conditions or try to understand them and advocate for my child in education, health or Social Care I am red flagged as Fii; it is said for my own gain. This is a heinous restraint on my knowledge to understand my son and is on every level inhuman.

This system impedes correct diagnosis, and impacts his needs for education. Furthermore, it restrains research and our growing knowledge.

If I complain or point out NICE guidelines, the chances are that I will be silenced by Fii accusation and put on child Protection. If I continue with stating the truth, my child will be taken.

· How is this possible in 2022?

11/

· How can a researcher attend a meeting about a disability such as ME, POTS and EDS that has been recognised as physical illnesses and misinform a group that they are Medically Unexplained or Psychological and use the acronym MUPPETS (South West Paediatric Club, 2017)[23]?

We all appreciate the term is used as a slang word for idiots. We can also appreciate how discriminating the word is upon the mind-set of professionals. However, it is still left unpunished by GMC and the MRC. Furthermore the researchers are supported by the Royal College of Paediatric and Child Health (RCPCH) who have paid for some of the research in which the conference was based. A full inquiry into this is needed due to the misinformation (Strategy & External Relations Directorate, 2015)[24] which states that “Any statement made to a regulator or a commissioner in the course of its statutory duties must be completely truthful and not misleading by omission”.

The Government felt that there was a lack of suitable redress across the health and social care system to cover instances where false or misleading information was published or submitted outside of the regulatory processes. Information published in such a way can put patients at risk of harm or conceal that harm has or is occurring. The FOMI offence makes clear to NHS providers and their leadership, that such behaviour is not acceptable and could be punished in the criminal courts.

It would seem both Fii (Perplexing Presentations) and MUPPETS break all the “The False or Misleading Information offences”.

If the medical Profession cannot or will not understand the perplexing conditions and has no experience of the illness or their symptoms, this is then put under Perplexing Presentations (Royal College of Paediatric and Child Health, 2021)[25] as put forward by RCPCH (who earn money from the courses they provide) as a sign of Fii. Therefore my child is under threat due to misinformation. This then forces him to say he is OK, allow others professionals; including misinformed teachers to gaslight him and I am taken to court and my child taken under the safeguarding being taught to everyone – “as a mother who may in the future cause emotional harm”. Laws just don’t protect me, I am silenced, gagged and bound by untrustworthy and confused direction given by the RCPCH (Gullon-Scott & Long, 2022)[26] as they report in the article there is no diagnosis and so much uncertainty, so why are there so many accusations, who has the ultimate responsibility of diagnosis pathways, it is the Government.

There is no treatment for his ME, though other conditions he has who do have medication to treat his coexisting conditions, however the threats made and lack of consistent knowledge of the robust facts, we are unable to explore these due to Fii safeguarding. This is down to the government, who have been repeatedly asked to take away harmful research and treatment and yet refuse to do so. It is the government who ask for new conditions to be explored and some of the research they have paid for with taxpayer’s money with regard to ME has been found possibly fraudulent. This research has been discredited the world over of how not to conduct a trial. It was called the PACE trial (Hug, Geraghty, & Pheby, 2021)[27]. This has caused misinformation and lack of trust in the medical professionals themselves and also the patients and the public.

What mothers like me are forced to do is beyond words. To rehabilitate our child with ME is like giving sugar to a diabetic. Post Exertional Malaise (PEM) is the inability to sustain any activity beyond - their own pre-PEM state. We are told that gentle or otherwise increase in activity which follows the Graded Exercise Therapy (GET) model is rehabilitative. Yet if this was tracked and on EHCP it would be clear for all to see this is far from the truth. It is used to get very sick children back into school regardless and has caused harm. Parents are also offered/expected to use a form of gaslighting their child with Cognitive Behaviour Therapy (CBT) to convince them they are not sick or any harm is going to come to them. This is also misleading courts who are happy to be misinformed?

Even though in 2021, NICE changed the guidelines on ME, the Academy of Royal Medical Colleges refused to adopt them.

NICE new Guidelines NG206 which incorporates social care and education (NICE guideline 206 Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndeome, 2021)[28] and it’s ‘Implementation Agenda requirements hold the key to some resolution, particularly in Suffolk and NE Essex NHS Alliance via integrated-care/sustainability-transformation-plans for patients, adults and children with ME.

This is co-production work, which I and others are engaged with, falls under your influence and under your ministerial duties. As well as being on your ‘patch’ of NE Essex, so I do hope you find time to inform yourself of this.

Please note: Leading the new Intergrated Care System in Suffolk and North East Essex Talk by CEO ED Garrett,

Date 5^th May 2022 time 18.00 – 19.30 BS Location University of Suffolk Waterfront, Neptune Quay Ipswich IP4 1QJ

12/

· How do you intend in gaining early support for children and young people and protect mothers and families from the ignorance and misleading information or no information given about their child’s medical disabilities, learning or general disabilities?

13/

The laws are there for all to read, so what are the incentives that you will put in place to uphold them and remedies for Local Authorities to make quick amends and retraining is put in place for continual learning.

14/

· How are professionals going to be kept accountable by you, when so many are not upholding the first 2 GMC Duties of a doctor registered with the General Medical Council and make sure they do?

1. Their important contribution to the management and leadership of health services and

2. The primary duty of all doctors is for the care and safety of patients.

The treatment of those with ME shows this is not being upheld. Professionals are given the allowance of confusion and difficulty yet parents who are non-professional in education or health are given no such allowances – they must get it right.

If the laws and the system were upheld from the outset of SEN in 1978 (Warnock, 1978)[29], which followed on from The Chronically Sick and Disabled Persons Act 1970 (GOIV UK Chronically Sick and Disabled Persons Act 1970, 1970)[30], the Children’s and Families Act 2014 (GOV UK, 2014)[31]which is now having a post-legislative scrutiny inquiry launched on the 9^th March 2022, an understanding by the Local authorities and of Government of the EHCP would be in place, the sections within them filled out correctly, we would have the infrastructure necessary and fit for purpose. Sadly that is not the case and that needs to change.

The answer to these public questions would give us the funding required with fact and figures attached and outcomes clearly seen, a seamless way of supporting and achieving the very best of education as in the Every Child Matters which was set out in 2003 (GOV UK, 2003)[32]. Yet the same failures, which was pointed out then, still continues or is possibly worse in 2022.

Failures need to be clearly marked and acted upon.

What we experience is an indiscriminate use of child protection, that actively harms children long term, hiding not only individual failures but teams, schools and Local Authority failures too.

We have seen that with the Maternity scandal the toxic professionals and the blaming of mothers and we are still silencing those that speak out. What chance do parents with children with extra needs have to speak up and out, when the Local Authority holds all the power with no accountability and bully boy professionals? They even now intend to hold advocacy as their own, giving more control and silencing powers. This needs urgent attention and you need to make sure this is addressed in the SEND review, as advocates like me are imperative to balance and understanding.

15/

· Does each “looked after child” get the best of educational assessments, when they come into the system and how is this reported, especially when we can’t even house them and protect them from abuse?

Your reform needs to make provision for the continual scrutiny of those children services, especially those taken from parents under Fii through asking for an EHCP. Those young people need to know why they were taken and need a chance later to ask their own questions, it is their human right to know what has happened in their past and their medical history that may impact on their future.

It should never be left to parents to hold Governments to account or fight for rights clearly stated. That is the job of Parliament - to challenge the work of the Government. However, we do not see that happening.

On the 9^th March 2022 a question was put to the Government by Lord Story asking Her Majesty’s Government how many children have an Education, Health, and Care Plan (EHCP) who have ME. The answer was that the department does not hold data on the number of children who have an EHCP due to having ME (UK Parliament, 2022)[33]. A stunning reply that clearly shows how hidden the truth is.

She explained that the department is committed to supporting pupils with medical conditions at school to ensure they have full access to education (UK Parliament, 2022)[34]. Sadly this is not borne out with the lived experience of those with ME/cfs in the past or in the present.

Another question was asked with regard to the education of healthcare professionals with regards to ME. On the 8^th of June 2021 Helen Whately MP minister of State (Department of Health and Social Care) provided a written reply to the question from Caroline Lucas MP on behalf of Sussex and Kent ME/cfs society (Sussex and Kent ME/CFS Society Parlimanetary Question -June)[35]. The reply was that each medical school in England sets its own undergraduate curriculum. There is little to no understanding of ME with GP as Gatekeepers to NHS hospitals and no to little provision (Hug, Geraghty, & Pheby, 2021).

· Is this going to change as the Government so far has been detrimental to young people’s lives with this condition and so has the involvement of Royal Colleges of Paediatric and Child Health?

16/

· So my question here is - are we lawless and misled with untrained professionals?

17/

· How are you going to keep professionals who are protected by ignorance of the facts from harming children with extra needs to enable them to have a level playing field in education?

In parliament questions, The Countess Mar drew attention to individuals who have mistakenly been labelled with Munchausen syndrome by Proxy. Fabricating or Inducing Illness (Fii) said Baroness Ashton of Upholland, was favoured as stated in 2003 (Hansard, 2003)[36].

18/

· Where was the evidence of this term Fii and where is it now?

Opinion or theory should not form Fii or safeguarding guidelines that segregate families or contribute to forced adoption. A longitudinal study of harm from unfounded accusations is urgently needed and in the public interest, as most of the public are parents.

19/

· Who asked for the name change and why?

I think this alone needs a full public enquiry as anyone can accuse a mother and she has no defence as pointed out above.

Now the problems with Fii are well known and so are the issues with incorrect data of individual GDPR. Even when told or given evidence, the Local Authority will not amend their records or EHCPs, nor will local GPs. Their bundles for court hearing are a joke. This is well known behaviour and is renowned (Gullon-Scott & Long, 2022). (Fii) accusations are on the increase when a parent asks for support.

20/

To enable you to complete the work on the review a full enquiry to Fii needs to be done with a full qualified forensic medical, Social Workers, physio and educational expert team, who understand perplexing conditions as pointed out above with parents with the lived experience as a full part of that team.

It is now time to make sure that the figures of these unfounded accusations are recorded and harms it causes noted - for leaning from mistakes purposes and to ensure safeguarding young people is assured and family life is protected.

This has been asked for since that 2003 (Hansard, 2003)[37] and just before the cot death scandal was reviled and the unsafe witness of Sir Roy Meadows and the mothers freedom in 2005 (Sweeney & fate, 2021) John Sweeney “22 years on, he fears we have not seen the end of a modern witch-hunt” In 2003 It is clear it was the Government’s intention to bring in the term Fii without robust and clear research or pathway. Clear procedures need to be put in place to take inaccurate and unfounded accusations off records, for the public trust in the educational and medical system to be restored and GDPR upheld. Baroness Ashton of Upholland stated,

“Well, my Lords if the allegation has been proven to be incorrect, that will be part of the record”.

SARS request show that is not to be the case. Nearly 10 years on we have no way of knowing the damage done, because mothers have faulty records, are silenced and families broken.

If those laws to protect the chronically sick and family law were upheld, teachers would have the support and training to enable schools to see how provision can be put in place, at the earliest point of a child’s needs with their EHCP filled out correctly. However, what we have is abuse on all levels of discrimination being carried out to stop provision and the support necessary. Good practice is the rarity and not the rule.

21/

· How is the Review going to address this openly and accepting responsibility and move forward with proper accountability?

Those good people in the system are not allowed to make the system work. Many are forced to ignore the plight of the children needing support from nursery, to post 16 and into adulthood. They are also threatened or silenced and not allowed to stand up for the parents or the children they are educating. This is down to treating our children as commodities, as in the private sector that we are beginning to see with Academies and Free Schools’. A need for profit over the needs of children is not what we should be accepting or paying for as tax payers.

22/

· How is your report going to change this culture of covering up, making a profit and hiding from responsibility?

The system is misogynistic, political, discriminative and abusive and allowed to continue by watering down accountability, transparency and humanity. The system is in anarchy with the most evil acts; which we have seen in education, social care, housing and health, all wrapped together when parents ask for help.

It needs the whole of the political spectrum to support what is necessary going forward. We have in the UK to understand standards, and be held accountable for them. The UN pointed out our failings in 2017 (Equality and Human Rights Commission How is the UK performing on disability rights?, 2017)[38] with regards to discrimination against the disabled and we are still struggling with inappropriate culture. Through the covid outbreak many autistic young people were asked to sign the ‘Do Not Resuscitate’ declaration,

· How is it possible to put DNR on a disabled persons records, when they are not informed of this as has been the case for some?

There are double standards of support and safeguarding between professionals and that of parents.

Complaints by parents are not dealt with respect or concern. They are simply denied and covered up; with professional reputations protected, leaving children vulnerable to professional abuse. Protection for professionals is the priority in the system from those in top jobs down to those that have daily contact with our children. We have all seen it around us and in the media and yet nothing gets done.

· What is going to be put in place to give the power to the system already in place and the encouragement to carry out discipline when needed?

The public, most of whom are parents, have been told too often, lessons have been learnt, when clearly this is not the case.

Litigations games are played to force parents to give up, losing their homes, businesses but most heartbreakingly their children; when they are simply desperate to do the right thing and support their child with extra needs in their health and education. Parents are misinformed, taken advantage of by professionals, who claim they have the best interests of their children at the heart of their workings. Parents, not knowing what it will mean if they fight, make a complaint or ask for help are left in trauma, when they go through the EHCP system and there is no way of recording this and therefore no learning and the same mistakes/targeted gatekeeping are made over decades.

All of this is documented and in plain sight for all to see and yet still we see in 2022, the same problems as back in 1978 when SEN was first introduced (Warnock, 1978)[39]. We don’t need to keep going round in circles wasting tax payer’s money on reviews or on court cases, we need appropriate supported professionals, following the correct procedures and the law, anything else is discrimination.

When the proper procedures, guidelines and the law is not followed there needs to be resolution in the local area, not sought by parents but by the authorities. Charities also have a responsibility when they see dereliction of duties by professionals that harm children. They need to ask for accountability and proper procedures to be followed.

How have we got the 2022 and do not recognise

1. The basics of those with autism, dyslexia, attention deficit and or sensory processing issues, all denied and child and parents blamed for bad behaviour leading to lifetime trauma.

2. Discrimination and belittling of those with chronic ill health and disability, in health education and social care. With no support given to children or listen to their parental advocates.

3. Learning difficulties still blamed on the child or parents not putting in the effort.

4. Bad research or inappropriate research paid for by government funds, talked about in parliament and yet still used in policy making. Such as PACE trial funded by DWP ‘One of the greatest Medical scandals of our time’ (Parliamentlive.tv, 2018)[40] and Fii not even diagnosable, yet parents can be diagnosed with this theory and it would seem by head teachers and school nurses or anyone else.

5. Mental health used as a weapon on either parent or child, which has no foundation of science or research and belittles the importance of mental health. We are seeing more diagnosis of educational, chronically sick or emotional growth as a mental disorder.

The lowest form of human knowledge is opinion, we all have them and it requires no accountability, no understanding and no empathy, yet most of the time this is what we face as parents when asking for support and some form of empathy for our struggling young people. Yet we are branded as dysfunctional or mentally ill, needing to fit some sort of need in us.

The new Children’s Commissioner said that she has no patience for “good enough” (Children's Commissioner, 2022)[41]. That the ambitions of every child being matched by the support around them. Sadly she needs to listen to stretched families, the schools and the lived experience of SEN children to fully understand the reasons of why education is failing our children and attendance low. Why are “looked after child” also being failed and not attending school and abandoned, especially those with SEN needs.

Parents are easy targets to blame; we have seen the increase of this in all our media and political arenas. Home schooling is being demonised, along with Education Other than at school, but they are an essential part of our education system from section 61 of the Children’s and Family act 2014 (Mason & Lee, 2021)[42]. Now with young people facing long Covid and those with ME that have faced decades of discrimination in health, education and social care; are we once again going to see discrimination for political gain in your review. Will we see a continuation of “parent bashing” to get numbers up in schools and out of special provision?

The highest form of human knowledge is empathy that gives support where needed without being asked, a seamless understanding of need, a way of being able to see the bigger picture of what can be done and how that strengthens our community and our workforce.

Your first duty is to our children minister, it is to safeguard them, their safety especially when we have faced with such disregard by professionals that we meet, silenced by them and made to stand back and watch the trauma of our child continue. Their health and wellbeing is in your hands. Look around you as MAY 12^th is ME AWARENESS DAY. Will you turn your office blue?

You can’t cite ‘I did not know’ as ignorance is no defence in law. I sincerely hope the words and your reassurance that you will be working hard to make this right come true.

Sadly after 8 years of fighting to get facts at the front of health, Education and care for my child and thousands of others, I/we still face the opinion by professionals that do not or will not understand, that tell most of the parents I know, incorrect procedure and facts.

Sadly I was failed at school being very dyslexic myself I was put in the lowest academic set. I was belittled because my reading was fragmented and my writing was like a dying spider crawling across the paper. I was told I would never amount to much.

I was told not to fight for my older children’s rights for the support that they needed, because “I did not want them labelled did I?”

It is with my youngest child and all those thousands like him, who fight every day to breathe, to survive, that I write to you, that I stand and make their voices heard. I know you cannot or will not listen to them as the system has taken their voices. You do need to listen to them to all of us that live the system, before the system collapses and our society and businesses crumble.

I am very sceptical that you will listen, but I am willing to be hopeful you will give our children the support they need through EHCPs. However, it will be the deeds of the future that will determine if the outcome for those with Special Educational Needs were supported by your paper and not just empty rhetoric that we hear on a daily basis.

Remember these young people are the future, they are the work force of the hidden disabled and they are as worthy of your/our attention as those that have no barriers to education.

What it takes to be a mother like me - a lot of knowledge because unlike siloes I have to know everything about my child’s Health, Education, Care and social work laws and what needs to happen. It should never be like this!

As always my letters are open on my blog for all to read and will be posted at the same time I send this email to you and also given to all who have had an interest in our children.

Kind Regards

Tina Rodwell

Childrens Commisioner. (2022). Where are England's children? Interm finding from the children's Commissioner's Attendance Audit. Childrens Commissioner.

Clements, L., & Aiello, A. L. (2021). Instituationalising parent carer blame, the ecperineces of families with disabled children intheir interactions with English local authority children's serices departments. Cerebra.

GOIV UK. (1970). Chronically Sick and Disabled Persons Act 1970.

GOV UK. (2003). Every Child Matters .

GOV UK. (2014). Childrens and Families Act 2014.

GOV.UK. (2010). EQUALITY ACT 2010. Equality Act 2010: guidance - GOV.UK (www.gov.uk).

Gullon-Scott, F., & Long, C. (2022). https://academic.oup.com/bjsw/advance-article/doi/10.1093/bjsw/bcac037/6543955?login=false. Oxford Academic, The British Journal of Socail Work.

House of Lords Livrary . (2022). Education: Multi-academy trusts. UK Parliament.

Information, advice and Support Program . (n.d.). Health Assessments and Duties . National Childrens Bureau.

Noble, J. (2020, February 17). School trust whcih breached discriminationlaws awarded five special educational needs contracts by Suffolk County Council. East Anglian Daily Times.

Royal College of Paediatric and Child Health. (2021). Perplexing Presentations (PP)/Fabricated or Induced Illness (FII) in children -guidence. Child Protection Portal.

Sir Frances, R. (2015). Freedom to Speak UP. UK Govenment .

South West Paediatric Club. (2017). A Day with the MUPP(ET)S - Medically Unexplained Physcial, Psychological Symptoms.

Stevenson, L. (2016, September 20). Munby: The system is facing a crisis, and we have no clear strategy. Community Care, pp. https://www.communitycare.co.uk/2016/09/20/munby-system-facing-crisis-clear-strategy/.

UK Parliament. (2022). Written Questions submitted by Lord Story. UK Parliament.

UK Parmiament. (2003). Written Questions child Abuse. UK Parmiament.

Warnock, H. M. (1978). Report of the Committee of Enquiry into the Education of Handicapped Children and Young People. Her Majesty's Stationary Office .

[1] SEND Code of Practice 2014

[2] Chronically Sick and Disabled Persons Act 1970

[3] (Royal College of Paediatric and Child Health, 2021)

[4] (Clements & Aiello, 2021)

[5] (Jones, 2021)Perplexing Presentation/Fabricated or Induced Illness: A matter for Schools

[6] NICE Guidelines Safeguarding 2021

[7] Clements, L., & Aiello, A. L. (2021). Instituationalising parent carer blame,

[8] Equality Act 2010

[9] The Robert Frances Review 2015

[10] FOMIGuidance

[11] (Bucanan, 2020) School trust which breached discrimination laws awarded five special educational needs contracts by Suffolk County Council

[12] (Noble, 2020) School trust which breached discrimination laws awarded five special educational needs contracts by Suffolk County Council

[13] Firm given ‘value for SEND’ contract slashed council care plans Noble 2020

[14] (Schools Week, 2022)

[15] Firm given ‘value for SEND’ contract slashed council care plans (schoolsweek.co.uk)

[16] Education: multi-academy trusts - House of Lords Library (parliament.uk)

[17] Opportunity for all - Strong schools with great teachers for your child (publishing.service.gov.uk)

[18] Autism and learning difficulties: MP urges closure of long-term units - BBC News

[19] Community Care, pp. https://www.communitycare.co.uk/2016/09/20/munby-system-facing-crisis-clear-strategy/

[20] Opportunity for all - Strong schools with great teachers for your child (publishing.service.gov.uk)

[21] Information, advice and Support Program . (n.d.). Health Assessments and Duties . National Childrens Bureau.

[22] (National Health service Act 2006 Section 3, 2006)

[23] (South West Paediatric Club, 2017)

[24] (Strategy & External Relations Directorate, 2015)

[25] (Royal College of Paediatric and Child Health, 2021)

[26] (Gullon-Scott & Long, 2022)

[27] (Hug, Geraghty, & Pheby, 2021)

[28] (NICE guideline 206 Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndeome, 2021)

[29] (Warnock, 1978)

[30] (GOIV UK Chronically Sick and Disabled Persons Act 1970, 1970)

[31] (GOV UK, 2014)

[32] (GOV UK, 2003)

[33] (UK Parliament, 2022)

[34] (UK Parliament, 2022)

[35] (Sussex and Kent ME/CFS Society Parlimanetary Question -June)

[36] (Hansard, 2003)

[37] (Hansard, 2003)

[38] (Equality and Human Rights Commission How is the UK performing on disability rights?, 2017)

[39] (Warnock, 1978)

[40] (Parliamentlive.tv, 2018)

[41] (Childrens Commisioner, 2022)

[42] (Mason & Lee, 2021)

2021-08-17T15:07:00.002-07:00

NICE have delayed again the publishing of the new Guidelines for those with ME or CFS and here is my reply.

Dear NICE

Can you confirm that all of the committee members had signed the guidelines off.

If this information is correct, could you give a full and transparent reason as to why you have delayed for the third time, the publication of the ME guidelines.

That by your own manual and procedures that state that you can only delay a guideline publication once.

That NICE is in breach of its own due process as mandated in its third delay.

I believe that this action of delaying for a third time, now warrants a Judicial Review and with transparency so that the public can be assured the correct protocols are followed.

That the NHS uphold their 7 core principles and that the Government uphold their duty to keep UK public safe.

That you have knowingly kept those medical professionals, researchers, patients, and advocates in the dark and allowed some chosen people, who have vested interests in CBT and GET to have secret meetings to influence the outcome of the guidelines.

I have been advocating and giving a voice to children and young people with long term chronic and rare diseases, for 6 years now. In that time, I have witnessed the trauma that medical gaslighting has done on children, young people, and their families, when they go through inappropriate ME/cfs services.

I have seen the confusion that the PACE trial and the teaching that ME/cfs is an illness belief. I have seen the suffering of the idea that pushing the patient is the method to recovery, through CBT and GET fail young people so badly, that some have lost their lives, while others are left house, and bed bound for the rest of theirs.

There has been a steady increase in that trauma, with a decrease in the understanding that ME is biological in nature. Where once there was an understanding of complex diseases, diseases with ongoing inflammation, autoimmune and infection. That understanding has been covered up with the NICE guidelines of 2007 and the pathways that they created.

CFS centers do not, will not or cannot diagnose ME, Lymes, EDS, Mast Cell, POTS, post viral, autoimmune diseases that can and do show in those with ME.

They will not understand and refuse to acknowledge the complexities of the lived experience due to their irrational belief in the only treatment they support, and this is causing a lack of research funding into biomedical reactions, which result in ME and now Long covid.

I have seen the fabrication of mental illnesses used on those complex and perplexing conditions that has been allowed to continue on those patients and it is shocking to have received the news today that another delay has been allowed to happen due to discrepancies between fact and their fiction.

NICE state that unless the recommendations in the guideline are supported and implemented by professionals and the NHS, people with ME/cfs may not get the care and help they need. What we and NICE have found out through the last three years, is that ME and cfs patients do not receive the due care, understanding, treatment or testing that everyone else does, this is discrimination.

Trauma is caused by professionals when they do not listen to the lived experience, are not made to take consideration of all the evidence and do not consider what they do is harmful. Even when legislation and law dictate, they are able to abuse their power over the system designed to support good health and the safety of the patient. We see violations of:

Do no harm

Duty of Candor

No decisions about me without me

Full and informed consent with all the facts known about impacts of treatment.

None of the trauma is logged by the CBT and GET professionals, neither are the suicides or falsely accused mothers of fabricating or inducing Illness. Mothers who have been forced to push treatment on their children against their better judgment, because those that advocate CBT and GET accuse them and that of their children of not trying hard enough and have been shamefully treated.

There is no accountability or Duty of Candor and therefore no improvements have been made in cfs centers, due to the control of those professionals that have forced CBT and GET as treatments and have continued to research these treatments against all common sense and science.

NICE guideline is there to enable the public to gain information, and support Drs to make the right choices on treatment, it cannot be made to go against its own findings. It must not be controlled by one small subgroup of medical professionals, that are known to misinform the public, is more vocal and have more clout than those that treat in a more holistic and informed by science and the lived experience of the patient.

NICE at the engagement meeting with regards to ME gave promises and assurances, if kept would have stopped avoidable deaths, children taken into care or going through the child protection system, medical cruelties and harms, Social Services mismanagement of children and young people with ME, Educational SEND disputes, discrimination within the Family Courts and the confusion now upon us in this covid-19 epidemic.

Viruses were once understood and their devastation they caused accepted and worked with knowledge and not against it. Yet in 2021 they are misrepresented as an inability of the patient to push through the pain, causing discrimination. Because of that discrimination and biases of beliefs with treatments such as CBT and GET, NICE have indirectly with their 2007 guidelines, supported by their inaction suffering on the most vulnerable and allowed that to continue over the last 3 years. NICE has a Duty of Candor that needs to be upheld in this making and delay of the ME guidelines.

NICE must keep in mind when they are building guidelines the obligations under law and regulations that prohibit discrimination on the basis of disability, race, color, national origin, age, sex and exercise of conscience. When they allow delays and bias opinion to influence when and how the guidelines are formed and released causing unrecognised suffering.

Causing disparity between your guidelines with such conditions of equal disability - such as between AIDS and ME should never happen. Sadly, with ME their lives on a day-to-day basis are more impacted upon, not least due to the attitude with which they are seen by the medical profession. We should look back at the journey AIDS had and understand the reasons why having psychological input can be so problematic and discriminatory.

We should have learnt our lessons of how this holds back our understanding as it did with cancer and smoking related diseases. Researched as personality types, connecting personality and health by Professor Hans Eysenck with questionable data using the same arguments as we see with all the CBT trials now coming out. The cot death scandal, shaking baby and Roy Meadows Salt and Sugar fiasco. The PACE trial and those that have published, but not robust peer reviewed papers, need to understand that their behavior will not be tolerated and do not fit into the NHS constitution of the 7 core principles.

The inaction of NICE to take down bad behavior by the Psychological lobbyists/Activists, is directly or indirectly discriminating against those doctors who do know about post viral ME, the destructiveness of pushing into PEM so deep there is no hope of recovery. The difference between cfs and the other complex conditions that go with infections. You have shut them out for far too long, causing mayhem in the health and social care system by your inaction.

The lack of understanding of ME/cfs has stopped us learning how and why the body fails and that is down to the cruelties and harms not being recognised or recorded and the patients lived experienced pushed to one side. Patient engagement means that everyone needs to record those cruelties or harms in the red flag system that is there for healthcare. Those cruelties and harms need to be understood and acted upon and Duty of Candor implemented.

NICE now must first acknowledge the harm and release the signed off guidelines on that understanding. You have been made aware over decades of the issues I have raised. A small minority that has an over big command over NICE have caused a lack of understanding and a way forward.

It needs to be made clear this will not be tolerated nor allowed to continue as point 6 of the NHS core principles states, “The NHS is accountable to the public, communities and patients that is serves” and the public and patients have spoken and demanded change, biomedical research and appropriate treatment which is in line with the biomedical research already available.

Kind Regards

On behalf of those silenced children, young people and their families over the decades.

Tina Rodwell

A Tilly Moment while living with ME - Sitting On A Bunch Of Keys

2020-02-07T01:07:00.000-08:00

ME is Myalgic Encephalomyelitis

PEM is Post Exertional Malaise

I had packed the car ready for the two-hour journey for my son to have treatment. I have 101 things to say about that but will leave that for another day. Going anywhere for my son Angus, is like getting ready for the Olympics, so much training has to be done in order to do an event and should be an Paralympics sport as a ME triathlon event. Event 1: getting out of bed Event 2: dressing Event 3: travelling in wheelchair of a distance of 100 meters, not self-propelled but pushed.

It sounds far-fetched and when I explain about this to any medical professional, it is met with utter disbelief and lack of understanding. How can simple movements; innocuous as they are for any ill person, have such detrimental effects that it takes weeks, months or never to recover from. The science is there but is complex and too much money is to be made from “Cognitive Therapies” to ever look at the truth.

The only problem with those who have ME entering an event is that they may never recover from even the training. You think I am over exaggerating, sadly I’m not. Look at the overtraining of the Olympians and you will find ME symptoms. In fact, there was a paper that showed the similarities, there is also a paper that explains PEM when doing a hand gripping test. Fluff, I broke my promise - to save the science for another day. Back to the event of the Key sitting.

Angus had struggled to wake that morning and this alone in enough to make the next week a bad week for him. He knew the importance of the tests and treatments so tried not to moan too much. I had to help him get dressed; he finds this so hard to accept. For any 14-year-old privacy and dignity are keenly felt and how do you honour that when he is so incapacitated on some days? The physical exhaustion was taking his ability to be mentally alert and is the first sign of him reaching the over training state and I knew we were in for a quiet drive. My heart sank to my boots and it took all I had to pull those bootstraps up. But pull them up I did, with my stiff upper lip.

You know that dreaded question about who you would invite to a dinner party - alive or dead, well very often at these times I think a lot about this. Among my invited guests would be an alert Angus. You see he can, at the right time of day and when he is not suffering PEM, be full of conversation, asking questions that only a quantum physicist could answer; like what Dark Matter is and how did the big bang theory start. I normally retort with who wrote the big bang theory for the TV series. Only I have to quickly go on my phone and find out their names as I’m not good at remembering names “Chuck Lorre and Bill Prady”, I respond. We both giggle; which is not good for Angus and this pushes him deeper into PEM, due to laughing being like a physical workout and his aerobic capacity reached. There is research to prove that laughing can be part of your exercise regime – I kid you not.

I have my own way of explaining complex matters which Angus finds both funny and exasperating. I tend to break them down to my level of thinking and use everyday objects I’m familiar with. So here goes for a Tilly Moment explanation of the big bang theory (not the program).

In a dark room, void of all matter I flack my duster which causes a bang - we have particles and static electric - the beginning of life starts. It takes a few minutes for his stunned silence to explode with his indignation of “you cannot be serious mum”. The joy of it has to be experienced at least once in your life; seeing someone so depleted in ability and suffering, to still be able to laugh and put a good forceful counter argument together, of how wrong you are, is so delicious. However, the guilt after the event is very hard to cope with and it is Angus that then pulls my bootstraps up and reminds me, it is not my fault.

On our 2-hour journey we normally stop for something to eat, another simple pleasure that most people take for granted. A break from the movement, cars flashing by and the rolling countryside that makes it so difficult for his body and brain to cope. He can’t get out of the car so a drive through is the only option. Those few minutes have become precious to me, a few seconds of normal life and to glimpse at the growing understanding of the complexity of the life my son now has. I don’t think anyone could be prouder than I am on these journeys, even if he won the Olympics or world events, I don’t think I would feel the way I do on those few precious moments. To know and truly appreciate the complexities of ME, you have to live through it to understand why I am so dam proud of him and why this young lad is my ME hero of epic proportions.

When we arrive at the centre, we all eagerly await for him to recover enough from the journey for his banter to start. His unfolding personality and his humour that brightens up their day is another rare joy that we want more of. We can all see the incremental improvements and with just a blood test to go we then make our way out to start the journey back home. This is one of the handful of times my son in the last 7 years has had outside his home. There are no charities that showcase his illness by sending him to swim with dolphins or to theme parks. No personalities that want to go on catch phrase to support my son in any way. He has no elevating carefree times, just an expanse of time like ground hog day, where the only thing that changes is his age - going from child to young man in the same state.

Navigating the doors with his wheelchair we treat the journey out of the building and into the car like a slalom, which I am happy to report I am getting better at. Time trials next. He has to sit for a few minutes before he attempts to get in the car; because we have laughed so much his body goes into a whirlwind of refusing to do anything but keeping his world dizzy and crippled with chest pain.

While he summons up the determination to move again, I put the bags in the backseat and busy myself so he can take the time he needs. I have to wait for him to move trying to engage with him at this point puts him under pressure to do things against his bodies better judgment and causes more problems later on. When he has got himself in the seat of the car, I pack and lift the wheelchair in the back and tie it down. As yet I have been unable to get a blue badge; again for 101 reasons but mostly because just trying to get proper healthcare for him is like taking a Mensa test while doing downhill slalom at speed. I have found I have needed a fully operational office and know a system that is as fragmented and hidden as Dark Matter. Getting a wheelchair in a car in a normal parking spot is difficult, two herniated discs prove that. I then proceed to find the keys that I have put in the endless pit of doom I call my handbag. No keys. I know I’ll empty it onto the backseat of the car. I find everything I have lost in the last 6+ months much to the amusement of Angus. But no car Keys. It’s not as though they are easy to lose either for the love of plucked feathers where are they. I must have put them on the folded seat in the back of the car while putting wheelchair in? No keys near the wheelchair? No keys, In the bags, they may have dropped in there? No keys.

We start to giggle as I look all around embarrassed, in and out of the car using my phone as a torch. Taking my own advice that I give to others; I start to think and visualise what I had done since unlocking the car. Where did I put the keys? Did I definitely unlock the car; self-doubt creeps in. Could I have left them in the building? By this time, we had everyone looking for them. I eventually asked Angus to get out of the seat so that I could look under the seat to see; in a vein hope, if I had dropped them there. Knowing this would cause him more physical problems I apologised and felt so guilty. However, there on the seat were the keys. “How could you not feel them” I asked? It’s not like there was just one key, there was a pile of them. We giggled about his insensitive behind and remembered when he forgot the chocolate, I had brought him one day that he sat on and which melted and made such a mess.

The elation of the everyday is a short-lived joy but one that I hope, in time, we will have more of without the PEM. For readers that do not know the ramifications of ME and PEM probably do not appreciate what a day out like this means to me and Angus. Angus has been 95% bedbound for the last 6 years and ill and house bound for 7. The next morning, he could not wake until 11.30 and it took him until 1.30 to be able to speak to me. His lips looked as if he had gone in the dessert with no water for days and the pain was painfully written on his face. He asked me to leave him, to let him recover he needs solitude, quiet and no interaction.

Living through these times is the hardest to cope with for me. This is compounded knowing what my other two children were doing at his age. For Angus like all athletes it is part of his discipline and the price he has to pay. Unlike athletes he has no one patting him on the back saying he is amazing. The feeling of inadequacy deepens for him. His bodies inability to live frustrates him beyond any endurance training.

This enforced solitude hurts beyond any words I have found or any analogies to equate it to. It takes all our strength of character to get through these dark times and he manages it better than me.

It can take weeks or months for his body to ease the grip it has on him and we both know from experience it may never come back. With the new treatment it fades in just over 2 weeks and back to the normal pain and difficulties that most of us would find intolerable, that he has had to learnt to accept as his new normal. We get ready for the next outing and one day; soon I hope, we will be going out to something he would like to do instead of doing something that he needs to do.

Like the opening of those glorious spring flowers now popping their heads out in the bitter wind, he starts his conversations and my heart leaps with uncontrolled joy on the inside and a loving smile on the outside.

The banter of a mother and son can be heard once again. The subject of my inability to keep safe hold of keys and his inability to feel those keys while sitting on them becomes a verbal tug of war and one of those family anecdotes you keep hold of and love the retelling of and long may that continue.

2020-02-02T04:46:00.000-08:00

I love the changing months, don’t you? I find it the greatest pleasure in life I think, the freedom to explore those changes. Be it rural countryside, town or city to see the changes of the seasons is a way of viewing the landscape with fresh eyes and senses.

The excitement of January leading into February with the lengthening of the days, everything is just waiting to leap into action. The fresh buds forming this year’s display of beauty is in every tree and shrub. You have to admire the Crocuses popping their heads above the grass, opening up in spectacular glory, delicate and oh, so brave at this time of year don’t you think?

Those concealed and tightly cocooned buds are like closed bursts of joy, filling out and loosening their grip waiting to pop out their magic. Plants and trees waiting to build on the previous year’s growth and those daffodils popping up in more abundance than they did last year, like little family gatherings building into that “host of golden daffodils” invigorates my thinking.

As I struggle against the bitter gusty wind and drizzling rain to retrieve the washing and the odd sock from our beloved sock killing terrier, Amber, I look up to see my son’s window and wonder if his “inward eye” can still remember how it all felt; that freedom of wondering around pain free and able to breathe easy?

I giggle as the line in William Wordsworth poem “I wandered lonely as a cloud” plays in my head. Looking up at the sky with its canopy of clouds I ponder - are clouds ever alone? We may just see one in our felid of vision but there must be more in the sky around the world.

Solitude, I used to dream of solitude. We all need it, to gather thoughts and allow our brains and minds to think with wondering thoughts. However, when it is forced on you when you are a carer or due to a body being unable, how do you fill your heat with pleasure?

Sometimes you know when I look out at the blackbird and the robin singing or tugging at worms; mostly when I’m doing the washing up, I’m finding it harder to look on those wonderful sights with pleasure and the frustration of being bound and gagged by my son’s ridiculed illness, is becoming harder to bare without that bubbling anger. Over the last seven years I have learnt a lot about self-control while being gaslit by those out of control gaslighters.

That poem reminds me of those long walks of babbling fun with my youngest son; a double edge sword now that can cut deep. Those carefully kept moments in time, when we had taken his older brother and sister to school, that I laid down so carefully to look back on are empty and hollow now.

He was never happy lying down, so pram walks were out of the question. I carried him in a pouch and then in a backpack. He wanted to be upright and able to see as he slowly slipped into slumber. This was my quite thinking time while the baby slept, and the dog wagged its tail while sniffing the undergrowth. This time, however, was short lived. Quiet reflective time was out of the question past the first few months. In the backpack he would babble with authority and would communicate all sorts of tricks to Grace our black lab.

As soon as Angus was born, he was alert, active and so full of life it was breath taking. He was never happy taking a passive role, if there was action, he was right in the middle of it and mostly the instigator of it. Some days I would stand back and marvel at his ability to cause mayhem in the most unexpected ways. He liked to do things in a pattern but occasionally he would break that pattern and all hell would break loose.

You see most mornings he would play with Grace next to me while I got on with putting the washing in. Hoping he was exhausted enough to just read a book or possibly having a little nap so more of the morning’s chores could be achieved. That gentle routine had been established right? Only a matter of planning another activity and well life was sorted - right? However, that gently and well-established routine had lulled me into a false sense of security.

Welcome to a Tilly Moment

I had my back to him, that cold and exhilarating morning, I was sorting and putting in washing while making a list in my head of the plan of action for that day. As children often do, he would copy me and as he sat there book or ball in hand and sock in Graces mouth his gentle babble and odd garment thrown that routine had put a glorious smile on my face.

I was mindful that Grace thought she was a washing machine and her spin cycle was out under the apple tree, which would only stop when she had found just the right spot to lay the item or items freshly laundered on the most muddy spot she could find. She would then sit and patiently wait for my arrival. This was playtime folks, oh the joy of it!

So far so good and everything under control take a deep breath.

I had just seen the tail wagging like a starting flag at the beginning of a race and wanted to turn on the washing machine before I started to “retrieve it or lose it” game and yes I did wonder which one of us was the dog, Grace for the “chase me” or me as a “retriever? I would find the odd bra when planting bulbs or stuck in the oddest of places in the kitchen - normally when I was making a drink for a client. Have to give it to them, they definitely kept me active, mind, body and soul.

This day however, for whatever reason was not going to that well-ordered routine. Turning round I was gobsmacked as I surveyed the carnage. The washing powder all over the floor, in Graces Watering bowl along with my sexiest and only one left, bra being used as a tug of war rope. It took me a few moments to register the fact he had unlocked the baby lock, opened the seal of the childproof box and where did he get the jug from, and the chalk, glitter and glue?

Grace’s tail was causing him to go into hysterics as it wagged. Adding to the hysterics was my flapped around trying to retrieve as much powder and put it back into the box. I grabbed the chalk from his mouth and dumped the jug in the sink. I wondered if I could use the rest of the glitter festooned washing powder in my husbands work clothes. After all he did tell me his life could do with a little extra sparkle.

I took Angus over to the only Angus safe room in the house. I was too stunned to be cross and as I put him down. He just got up off the floor wagging his finger at me as though I had done something wrong. Turning back from him and the child gate, I couldn’t help myself but to chuckle.

After cleaning up the mess, I made a coffee to get ready to read the book he would have chosen from the bookshelf. It was our time - me for a coffee, him for a story and Grace for a bone. I made notes not to buy powder ever again and complain about the child locks, childproof box, surely Angus can’t be the only one who could open them?

I found him, however sitting on a large pile of books reading one to Grace who was intently looking at him. Not sure if she was listening or just waiting for a bone but it was a wonderful sight and I stood listening for a while. When he saw me, he tried to scramble off at such speed he rolled down the mountain of books and bumped his head. Wondered if he should cry for a second or two but decided to carry on reading, red mark forming on his forehead like a large egg and grace with her chin on his chest - his constant guardian and the ultimate companion and protector from his mother’s telling off. Her golden amber eyes all-knowing and loving, just put things into a perspective. He is only young once - he will learn - let him be.

Grace died when Angus was around two. Our companions now are two Norfolk x terriers’; mother and daughter. They taught him to ditch jump and run in circles of joy. There were times I just wanted 5 minutes peace to listen to the bird song, breath in the fresh icy air and drink it all in. Or to sit for a while and have a quiet cup of coffee looking at the robin and blackbird, as they sung in our garden. The feeling of satisfied exhaustion settling down my day while I read to him and he slowly slipped into sleep. I would look on him as I did the tightly closed buds of that emerging spring. He was so full of potential, joy and wonder just ready to burst into life and make his mark.

It is these memories and times that I remember now when I walk. They bring never ending tears in my heart, that prick my eyes so that I can no longer see the beauty around me. I am riddled with guilt when I walk, as I walk free and easy while he is cocooned in pain and in such depleted energy.

The exhaustion I felt back then was one of fulfilment, the exhaustion I feel now is of frustration of being let down by a system that is hell bent on portraying me and thousands of mothers like me as “demon mother”. There are 101 reasons for this you can read them in my blog over the last 7 years.

However, nothing compares to my son’s exhaustion. It is like watching your delicate promises of this year’s perfect rose being frozen, while gradually seeing tears appear in those delicate petals, one petal at a time. I feel as if I’m watching that most glorious rose bush, stand alone with stunted growth, riddles with viruses, mildew and green fly, wondering how much more it can take.

I have always dreamed of writing a silly little blog, full of Tilly Moments for friends and family to enjoy. That came to an end when Angus fell ill with Myalgic Encephalomyelitis (ME). They renamed ME with Chronic Fatigue Syndrome (CFS). My son does not have fatigue, he has exhaustion in every cell of his body. Heart breaking as it is, the worst thing about it is the abuse of mental illness, being used as patient blame and demonising motherhood. It is easy for the medical profession to convince the public those that suffer with complex conditions, are unworthy of support or biomedical research or treatment.

So, what to do? How do we change things? I can’t leave it like this can I?

Change will only happen if we start to talk about what ME means and allow those young people like my son to have a voice. Problem is, he is too ill to engage and talk. I need the public to get behind mothers and bring back the respect and common sense. The evidence that mothers have been keeping children safe for millennium is there for us to see and how many children needlessly die because a mother is not listened to or discredited.

My son’s body has changed not his personality or his mental state. The only suppression of his personality is the debilitating illness he suffers from.

He maybe frozen and damaged but his humour is intact and from time to time we have still have “Tilly Moments” and by hook or by crook, I will continue to write our silly happenings to bring awareness to the lived reality of ME but mostly to bring a smile, a giggle or perhaps a belly laugh.

2019-07-22T01:17:00.000-07:00

Sometimes there is so much to say.

It seems to me *open and transparent* are becoming buzz words with no real meaning, along with *patient safety*.

Sir Andrew McFarlane gave guidance on reporting in the Family Courts and asked for views so I thought about how we as women and as mothers are treated and viewed when we try to protect our children when they have

I am a layperson and not a professional – my own experience and unique knowledge of what happens rather than what professionals understand and what statistics seem to portray - needs to be respected and presented so that the family courts are able to see the whole picture, not just a part. I firmly believe the courts should be as open as possible and that it is important that journalists are allowed to report in a proper and safe manor.

Through many complex medical conditions Fabricating or Inducing Illness (FII) is being used as a weapon against mothers in two ways - first to control and the second to hide failure. I will be mostly, but not exclusively talking about one multi system disease hidden and abused in this way called Malayic Encephalomyelitis (ME). I advocate and support those families that try to navigate the system that is more designed to entrap them into FII then to put the child at the centre of care and wellbeing.

There are no known cures for ME, no biomarker and the normal treatments given by the NHS are known to harm and turn a moderate case into a severe case (1). There is no understanding of this in the medical fraternity as a whole. Severe ME has been equated to the end of life of AIDS patients and many who have suffered AIDS or Cancer say they would rather have those conditions than ME. Yet most, if not all doctors are unaware of the severity of pain or possible harms as they are not reported (2). So how can professionals come to court and express what ME is and why it is vital to understand Post Exertional Malaise (PEM) (3)?

It is true NICE are taking down current guidelines and looking at ME again. I go into this further on.

The way FII is now implemented puts all parents under threat, loose terms of “Possible Emotional Harm” can be used in a multitude of ways (4). This leads to unrealistic expectations of behaviour by the professional on the family and the chronically ill child in their hour of need.

As soon as my child was diagnosed, I was aware I was viewed as the problem - that they should literally beat me emotionally into shape so that I behave. They can take me to court on fluctuating grounds and these constant threats are enough to break the strongest of wills.

The medical professionals make it clear - I must know my place and not respond with the truth or my child’s reality, as this is deemed a negative view that impacts or imprints on my child’s physical and mental health.

I must know how to treat my child and emotionally support the medical, educational, and social professions as they sadly flounder with my son’s reality.

I must be able to let all authorities know when my child will be ready for school, even though the medical fraternity are in dispute and my child is not being fully diagnosed.

I must accept that “do no harm” has been flouted for decades.

I must be prepared to push my child beyond his endurance and stand quietly by as the uneducated or miseducated professionals, threaten me and my child with the court or the mental health system. That harm is never recorded and is never ending.

I must know the procedures of court, mental health act, education, medical and Social Services, even though the authorities do not, yet am threatened because I do.

I must be able to use the pathways that are confused, disjointed and convoluted, while some professional’s cherry pick to turn everything against me and protect themselves.

If I know and assist the professionals that are wrapped around my child’s care, I should be viewed with suspicion and those professionals I have helped or informed targeted too.

I must understand the words and the meaning of that professionals’ discipline. However, if I start the conversation with those words I am to be viewed with distrust.

They can infringe on my social media and twist everything I say but if I point this out, I am being obstructive.

I must not come across too anxious but if I show lack of concern that is a problem too.

If I look for information on my child’s illness - I must be trying to manipulate the medical fraternity.

If I don’t look up the illness - then I am not showing enough concern or leave my child to be misdiagnosed and mistreated.

If they take me to court, I have no defence against that plethora of misinformed professionals, who each have their own legal team and do not necessarily have to have had contact with my child.

I am demonised before I have chance to defend myself.

How can I make sense of it all?

My views, my innate parenthood denied, and my reality stripped while I am gagged by the court (4).

This all goes on in front of my son as though he is an object of no importance. The family courts along with learned professionals that have a comfort curtain around them, takes his voice away. My son, who I have taught to be proud of who he is, to battle against the stigma of his chronic illness, who is honourable and truthful and through all that he has gone through, be hopeful things will change.

My son’s beliefs, dreams and personality has not changed, his body has. No professional sees that apart from just one who knew ME and PEM. My son who would walk before he could crawl, who would run before he could walk, climb trees, ride his bike with his hands in the air, is the same child who is isolated in his room, unable to dress some days. He is more crippled by the professionals than his disease, that takes his ability to produce enough energy to make movement free and easy and without pain.

I have had to listen to his questions and try to answer them as best I can.

“Why do doctors hate me so much?” My answer goes along the lines of - Hate is a strong word my son, they don’t hate you, they just don’t understand ME and PEM.

“What do I have to do mum, for them to understand that I am ill, die?” This one is particularly difficult to answer because young people have died of ME and yet still his disease is not taken seriously. What would you say? Who has the right to say what threshold of pain a child should have for any illness or how long they should endure that pain - let alone add to it by complying with the wishes of a few?

I am the mother of a 14-year-old hero of ME (5). My son’s disease is not understood by the medical profession, in fact it is not taught in medical schools. This disease has been deluged with miss and nonsensical information (6). If the Doctors do not get the correct medical training based on the facts of the illness, they cannot diagnose, give a balance so that parents can make an informed choice and duty of Candour is not possible (7) Dr Muirhead only found out about ME when she came down with it (8). Where does this leave the family courts?

When a young person such a Gigi who less than a year ago was full of life and vibrant came down with something (no test to find the cause) and slowly lost her ability to move or digest food, her condition was not taken seriously. In less than a year she is bedbound and paralysed. She expressed a concern about the treatment advocated to her by the hospital staff who believed in the so-called evidence-based research and information they had been given; she was ignored.

I believe they did not follow the NICE guidelines and evidence shows she was right in her concern and her thinking (9). Gigi explained in eloquent terms how the PACE trial was flawed science and yet the staff forced extending movements and removing her mask from her eyes, this was expressly against her wishes. They threatened her mother with FII and explained they were looking to put Gigi in a secure mental health facility. When she tried to advocate for her daughter the staff dismissed her and turned their backs on the decline Gigi was slipping into and her increasing pain. How scared do you think this venerable young person feels?

Gigi went into hospital being able to speak and walk aided, she came out only able to give a primal response screams and paralysed. Yet the staff blame the mother. The emotional impact of this on all the family members I cannot convey, due to my inability to express through the words in my vocabulary. There are no words to express the living hell they are forced to live now. Yet so many have gone before and will again if Gigi is not heard. There will be no accountability as there never has been before and the situation will continue in this status quo.

Gigi was forced back into hospital and the staff’s regime has not changed. Gigi is unable to object as they dismiss her voice. And through the mounting threats her mother has to sit next to her bed and try to advocate for the doctors to read the mounting evidence of dysfunction in her daughter’s body.

As mothers we know what would happen to Doctor Dionne Joseph and myself if we were to be taken to the family court and that is scary on every level. We should be supported by the medical profession to get the very best care for our children. We should not be fighting accusations every step of the way. Our children need us to be there and focused on them. To find a possibility of a very rare occurrence of FII they are harming thousands of children. 25,000 children suffer with ME in the UK, most mothers if not all will go through accusations of FII.

When children are taken into care with misunderstood medical disabilities their lives are put in danger. One young person with double stoma had their shoe inserts taken, forced to push their wheelchair into school and abused verbally on a daily basis. They were viewed as “worried well” an imprint of their mother’s anxiety or control rather than incredibly sick. They came out of care starved and had no healthcare for the 2 years under the corporate parent. The emotional and physical harm will never be heard unless they have the funds and capacity to pay for carers and the courts. They have no choice but to deal with the aftermath themselves.

This young person now has life threatening curvature of the spine. Who is there to hear their years of hell and learn from the mistakes made? Is this young person ever going to trust the system? Will the family court ever learn from this? How many have been through the care system in the same way?

I promised them and many more like them, I would tell the courts, healthcare and the all the professionals that will listen of their experiences as their voices have been stolen. I promised to be brave enough to write down what happens to them and their families.

Mothers are their safety net, their advocate, main carers and support. However, we all know, I will in all probability fall on deaf ears, after all who am I? I am just a mother a layperson. No professional wants to hear the devastation they cause, and balance is weighed on the professional side.

You have to protect children that is true, and you have to make sure their best interests are at the heart of care. It is the responsibility of all of us to make that happen and that is the reason I’m sending this open letter to all those who should protect children with serious and complex medical disabilities, that at the moment are so badly let down.

Below is an outline of how the system works against children and some of the history of ME. ME was once treated with the utmost respect by those that could have taught us so much; Dr Melvin Ramsay, Dr E Dowsett, Dr Petersfield, Dr A Franklin, Dr T Mitchell, Dr S Myhill and Dr N Speight.

What the Charities find

Organisations such as the Tymes Trust are only too aware of the problem of false accusations of FII that are now daily being thrust on parents and in particular the mothers of children with this complex condition. As Jane Colby said on the 5^th June 2019 “Medical Dogma, blind refusal to accept the reality staring them in the face” this is the true problem with ME. With now over 225 false accusations and supporting one family who are now facing a second accusation (10); it would seem having a diagnosis is no protection. Unfortunately, with ME our children are targeted and penalised for no biomarker. There is no biomarker because there is no funding into one in the UK at this time.

Action for ME survey 2017 (11) shows the same problem with many more organisations showing the same picture. The damage done to these family’s needs to be known, acknowledged and fully understood. Emotional harm can and is being done by professionals to innocent families and physical harm to our young people. 25,000 children and their families disbelieved and threaten. Their family lives not only torn apart by their child’s medical disability; that takes everything you value in life, but also the surveillance allowed on personal and private thoughts and feelings.

So, what is ME?

ME is not Chronic Fatigue Syndrome (CFS) as CFS is any fatigue after or with any illness or treatment; whereas ME is defined by Post Exertional Malaise (PEM). PEM sets in after any activity either physical, cognitive, emotional (especially excitement). Once in a PEM state the impact of other activities deepens the severity and lengthens its impact. It impacts on a multitude of systems dependent on that individual, throwing them just out of kilter that causes extreme bodily and cognitive exhaustion, pain, sensitivity and can be life threatening. It destroys any normal family life and children have no safe place of understanding to turn to, their reality gaslighted.

All the usual tests used come up normal. It should be noted that tests are not infallible; Lymes for instance is known to be inconclusive giving a false negative. Even though Lymes is caused by bacterial infection passed on from a tick bite, due to the lack of knowledge and direction it has become one of the many disbelieved diseases in the UK. Many children find out when they are a young adult, they have been suffering from Lymes. Just because the doctors are unaware, or lack skills does not mean the mother is falsifying the pain their children are experiencing. Mothers asking for or having private Lymes tests are again under threat due to the new improved safeguarding guidelines.

It also should be noted that there still is limited understanding of our bodies and all its reactions to physical or physiological stressors, such infections of different types. “Do no harm” should be observed when so many share the same journey, even when a test is not available. The courts need to be given the full facts not just the preferred narrative. They can only do this if families are listened to. A doctor will only see a child in the consultation room and not the two days after when PEM sets in. Therefore, they have no experience of PEM and the devastation it causes to the body.

ME is a common complex disease that in 1969 was listed by the World Health Organisation as a neurological disease, yet 80% of neurologists in the UK are unable or unwilling to look for signs of white matter loss or neurofibrillary tangles of frontal cortex, thalamus and basal ganglia problems. New research is looking into the problem of lactic acid within the brain. I have known many mothers asking questions of things picked up on scans and yet they are ignored, and their concerns patted away. Neurologists are led to believe it is more a behavioural issue and belief, so dismiss what they see. Through the pathways on NICE they are told not to bother with imaging or testing; therefore, they do not look, we never learn the different phenotypes and parents left wondering what the differences mean. When a case comes to court the information is put to one side and dismissed and the truth stays hidden. Many more are denied tests of any kind.

ME is said to be one of the leading chronic long-term conditions that causes absences from schools and yet no records of numbers are kept. There is no prognosis that is backed up by figures or disability provision ever reviewed, so no support for those who suffer, and no funding allocated. The medical profession have been allowed to discriminate against those who have ME with impunity. The courts should be fully aware of the history of ME when a mother comes before a judge accused of FII, especially when they are accused of “possible emotional harm” due to the confusion of PEM and its impact on ability.

Professional Behaviour Gaslighting and Gatekeeping

The LeDeR report for those with learning disabilities (12) shows clearly the failings in the system of not listening or understanding, with no one being accountable for their lack of humanity. This causes discrimination. If the families were listened to, then mistakes would be corrected, improvements made, and money saved. The family courts need to take on the same sort of system. ME and PEM, like autism should be well understood and yet they are victimised when they ask for help from the Medical, Educational or Social professionals in 2019.

Jeremy; Bethany’s Dad showed how mothers/parents are perceived and blamed for behaviour (13). How courts can silence and how unrelenting the pursuit of parent blame is by professionals. Going against a gaging order he spoke out and the truth is now being show for what it is. Professionals should be welcoming criticism when safeguarding children and young people’s family life is about to be taken.

There is an urgent need for the family courts to be open and transparent, allowing scrutiny and improving education of the reality of living with and caring for, physical medical disabilities. Judgements
should never be made when a child’s reality is denied, and their voices silenced.

The curtain of protection around the professionals needs to come down and the safeguarding of children put at the centre of family law, health and social care where it belongs. Courts should take seriously the safeguarding of children against professional mismanagement and abuse of gatekeeping provision, as this makes our system discriminatory and unstable. Understand the level of harm it causes, especially when looking at non evidenced based cases of FII. There needs to be a recognition of the emotional strain that is put on the family especially the main carer, the frustration and defensive manner the system evokes should also be acknowledged and understood.

There are enough cases through the decades to show that children are used as objects, dehumanised by the state and the corporate parent is letting children in care down. If their chronic medical disabilities are not understood then how can the corporate parent give good care, education and emotional support that is equal to or better than the parent (14)?

That secrecy and inaction or delegation of responsibility only protects those who value their good names and their carers. While those that strive to do the best they can, are leaving health and social care services in droves and our collective health and wellbeing is suffering.

The behaviour against Whistle-blowers or those that test/question the system throughout our health and social infrastructure, goes to show the systemic power at all cost approach to health and social care and how politics have shaped our integral workings as a society. When you stop looking for the mistakes and wrongdoing, is when a system falls apart and fails (15). It has fallen and is failing those who need protecting the most.

We all have to take responsibility and play our part in building what should be or was once in place. Courts need to openly show how many cases of FII are seen, how many are false and where mistakes are being made - especially with a multi system and complex disease where physical health is not fully accounted for. What should or could be done differently - was “do no more medical harm” considered in these judgements?

Looking at ME as a parent when deciding what appropriate treatment to give, I have found asking for information to give informed consent can easily lead to FII accusations. I have always believed that it is gullible and irresponsible to just accept “to never question” or not to ask others opinion and experiences but that is what is expected of you when your child who is very poorly with ME.

The Health and Social Bodies that say they are there to protect and make sure a gold standard of care for your child is there - has let them down on every level:

National Health Service (NHS England) (16) Are funding a trial where parents have to take a course along with the child with ME and PEM is not mentioned. It may not be their intention to demonise mothers but that is the reality. They do not acknowledge deaths or severity, so when we talk about our child’s experiences, the medical fraternity do not understand the seriousness of their symptoms. They do not take seriously anaerobic threshold and no safeguards with regards pushing the child into a possible metabolic trap, among other things. No informed consent could be achieved using this protocol. This FITNET-NHS trial is important for the courts to understand as it is already being advertised to GPs as a cure, even before the trial has started.

Why are these trials happening and parents in a multi systemic disease that is known for an inability to sustain activity, when even thinking can provoke a prolonged PEM state? Professor Ola Disrik Saugstad who was the World Health Organisation adviser, compared the treatment of ME patients to those that suffered lobotomy’s decades ago and stated, “When the full history of ME is written one day we will all be ashamed of ourselves”. That was in 2009 and still the treatments are being forced on children via FII accusations through noncompliance. Everyone states this should not happen but that is our reality.

National Institute for Health and Care Excellence (NICE) (17) New committee on ME refused many world renowned Drs to sit on the committee and have an unhealthy lean towards those that feel Cognitive Behaviour Therapy (CBT) based on the PACE trial, can cure the systemic physical and biological changes that have been found through the decades in patients with ME. Countess Mar has raised concerns about the research being looked at as “relying too much on old research” and they seem to be dismissing new findings (18). This goes directly against the Duty of Candour. How are parents to have confidence in the system when you look back to how the 2007 guidelines were objected to by many medical, advocates and patients, 12 years on and we are still struggling to be heard. 25,000 children silenced by one small group of professionals.

General Medical Council (GMC) (19) Support and protect Drs only. Decades of pointing out errors with treatments have fallen on deaf ears. Hounding other doctors who support patients and not the establishment view is well known and examples like - waiting 28 years from knowing about the virus that sets of stomach ulcers to giving proper care, is just one we have long gone past 28 years with ME.

Instead of looking at all facts of ME mothers are blamed, children taken into care. Cot deaths in the 80/90s should have taught us to be more vigilant and hear the voices that say the same experiences. Still that flawed and unproven theories (20) are held against those parents that have children with complex medical disabilities. Having such a lengthy period of denying before the establishment then decides to take a deeper look and investigate, is really unacceptable when so much emotional harm is being done. 30 years of ill treatment on children with ME is unforgivable. Professionals also lose the ability to look beyond normal when diagnosing and the harm continues. A full review of FII research and their handing of complex cases needs to done.

Medical Research Council (MRC) (21) The research funding speaks for itself as there is no balance, along with the dates of the meetings it is truly shocking how little regard and discrimination is shown for a huge population. They need to listen to the needs of the children with ME and PEM. If you compare their funding with male pattern baldness it is truly astounding where their priorities are.

Medical Journals. Need to acknowledge and be made to take down flawed science (22), (23) (24) letting misinformation compound the misery of children is unbelievable. Many lives are worth more than red faces.

Reviews in medical journals should not be marked by friends that are working together to protect each other, silencing the child’s voice, their advocates and parents by name calling is unprofessional. (6)

Royal Colleges educated by those that have flawed theories and research and do not engage with the children with ME and PEM also need to be reviewed (25).

Child Adolescent Mental Health Services (CAMHS) (26)No understanding of how to protect children with autism let alone complex illness such as tickborne infection as with Lymes. Yet CAMHS never look at biological cause to mental health. This shows a constant inability to diagnose or differentiate between physical, emotional or brain injury caused by disease. If they did healthcare would be greatly improved. A full review of their involvement is needed. One young girl in Norfolk pushed from pillar to post and treated as anorexia, not given a feeding tube and yet had CFS shows how ME is not recognised. What are her underlying health issues (27)?

Office for Standards in Education (OFSTED) (28) No mention of Chronic or long-term illness so those with cancer, ME or rheumatoid arthritis are discriminated against and not supported by OFSTED. The only place the word “chronic” was written was to do with attendance “chronic non-attendance”. If ME is the leading cause of absences in education and no medical professional can describe, diagnose or treat ME and PEM - then in all probability those with this condition are going to be targeted and suspected of not complying with treatment either by the child or by parent.

Special Educational Needs and Disabilities (SEND) are looking to the medical health aspect of disability in the year 2019 (29). I would have expected that the Child Educational and Healthcare plan would have included health in education, before now. This causes a gap in provision causing many FII accusations.

Children and Family Advisory Support Service (CAFCAS) are working on a false understanding of what ME and PEM is, and the problems parents have, not to mention the child. They should actively be seeking clarification and demand more respect for children with medical disabilities. Who hears the child’s voice in this? They have constantly pushed for the threshold to be lowered to have emotional harm in the professional sights, without understanding the harm they do as a consequence. Tracking children with health disabilities and not understanding those diseases, takes up vital funds and take resources away from the most vulnerable children who are likely to be killed and need the most protection (30).

Department of Work and Pensions (DWP) (9) The PACE trial was part funded by the DWP. A trial that will go down in history as a teaching aid of how not to conduct a trial. This trial has done so much damage both physically and emotionally to patients. The relationship between medical professional and patient has been damaged, that has ripped apart families and fuelled mistrust. All this damage by those that teach and promote Psychological medicine.

The family courts and courts in general are allowing too many organisations who systematically use FII and wrongly accused parents to carry on doing so. Closed courts must take full responsibility for this, as they deny access to all. As no statistics are collated this is hidden and the abuse of power is allowed to continue. Yet you talk to those professions around FII and they all agree that there is a systemic problem and an industry being built around FII accusations that sight emotional harm.

A professional narrative that does not fit the lived reality. Statistics only dehumanise and data is not fully held, there is no independent scrutiny. Therefore, facts and the lived reality is hidden.

It is about time all the entwined organisations are made to join together to protect our children and their families, when they have medical disabilities. Disabilities deserve the same quality of health, social care and standing that is expected by us all. However, the many pathways through the system target health disabilities as FII.

What does this all mean to the child and their families? Complete and utter devastation in children’s hour of need.

As the family fight for their child’s human right to be heard and their reality recognised, they are unable to support their child. Compounding a very difficult situation into an untenable one, few are able to endure.

I am not unique; my experience follows a pattern for thousands of children. Each day another family start out on that same path I have journeyed - it is both shocking and shameful.

I have found over the last 5 years there is no such justice, respect or understanding of the healthcare needs of several multi system disabilities. The system requires me to perform not as a human or as a mother but as a system facilitator, that can be set in a tick box that has parameters that fit in designated statistics.

I’m one of the parent carers who represented children, their parents and families to have a voice on the engagement meeting for the new NICE guidelines for ME. Parents have a particular difficult time as you can hear in the debate held in parliament in January 2019 (31), the previous debate was on the flawed science (9; 9).

It is said 1 in 5 of our families are being falsely accused of FII due to the historic problems of ME, this is unacceptable in 2019. There are an estimated 25,000 children with ME in the UK, that is a lot of false allegations based on false information.

The emotional harm caused to parents trying to protect their child’s health and wellbeing is never considered, neither the impact of this on the child. The system does not consider the emotional harm the ill-informed professional steeps on children. No figures are kept on false accusations and their impact on families and the children reviewed. Countess of Mar has worked hard to try and obtain balance in the Forward for ME meetings she holds throughout the year (18).

FII accusations are made without the full understanding and impact of ME and PEM. This is astounding as PEM is the distinguishing mark and diagnostic tool of ME. No harms are reported even when a steep decline in health is seen. Research undertaken on young children with no reporting of lost ability and therefore harm and PEM is not looked for or reported on. Yet mothers are bound and gagged by threats of FII accusations. Who is there to protect the child? What emotional damage is done to the child and how do they regain trust in adults afterwards?

There are now very few professionals that understand ME and PEM in the UK due to the combined working of the system. How convalescence rest is needed when in a PEM state and why and how spontaneous recovery; that happens when you have a normal infection or the flu, does not happen in ME. Due to this lack of understanding ME has been treated openly and by most that should protect our children with – disrespect, neglect and ridicule. Over 100 paediatrics attended a MUPPETS day. What other illness would anyone think that it is acceptable to call children MUPPETS? (32)

We were reassured at the engagement meeting held at NICE that biomedical research and those that understood ME and PEM would be involved, we have found that this is not the case and we are left as parents fighting on every front to keep our children safe and educate the medical profession who very often feel powerless, which is shameful.

Receiving an email from the Royal College of Physicians in charge of overseeing the guidelines into ME I wrote a response to their call for tender from researchers. They are still not asking for those that have been falsely accused of FII but have moved on their approach to children severely affected. They still have not asked those who have lost their child through ME to add their experiences. I will be sending this letter to them to show their impact on the courts.

This is my emailed response to their request:

We believed right from the engagement meeting that NICE was to engage with children who have severe ME along with the adults, enabling them to have a voice from the very start. Why has this not happened?

We also believed that mothers falsely accused of Fabricating and Inducing Illness (FII) were to be heard. These three experiences show the true picture of the treatment of those suffering with ME in the UK today. These facts raised patient safety issues and we were assured that every effort would be made to engage with those who suffered the most.

You cannot make sound guidelines without that true picture. Without those that are hidden from statistics, due to not daring to ask for help because of the current climate of patient blame, demonising motherhood and vicious media assaults on those that ask questions of the medical profession.

On the engagement meeting we thought NICE agreed and acknowledged the problems and were intent on changing the harm done to those most vulnerable. However, it would appear they just gave us “lip service”.

To ask at such short notice - a total of 16 days and demand research in such a manner shows a distinct lack of respect to those who have ME and their families. It also points to NICE just going through a formality and this erodes the little trust the ME community have left with NICE.

The stipulation of tender gives rise to serious issues:

1. A serious lack of understanding of ME and PEM

2. A serious lack of understanding the research capabilities in the UK for those with ME and PEM

3. A safeguarding issue to those young people that have been traumatised by the system.

4. A conflict of interest with those involved with treatments of CBT and GET and needs to be clearly addressed with researchers putting themselves forward.

5. Ethical approval needs to be gained.

6. A lack of understanding of how the revised NICE safeguarding guidelines have impacted on children with ME on accessing education, involvement of Social Services, healthcare, and the courts.

It shows that NICE are just giving lip service to those that suffer the most. That they are willing to disregard the facts and experiences of families.

Why is this such a concern? The National Institute for Health gave funding to those who cannot explain or have a lack of understanding ME and PEM.

1. Recently the Royal College of Paediatrics and Child Health engaged Professor Crawley to carry out a study on severe children and adolescents (16). This was funded by The National Institute for Health Research and Royal United Hospitals Bath NHS foundation Trust. I believe there are 101 things of concern with this study, but mostly in the abstract severe ME is described as

“Occasionally children are severely affected which means that they are unable to attend school and rarely leave the house. They often spend most of their time in bed and can find light and noise are painful”

This does not describe severe ME. Severe ME is an inability to breath freely, tube fed, unable to talk, unable to tolerate light, sound or touch without triggering a severe and prolonged PEM state. ME can lead to death.

2. In the British Association for CFS/ME working group on Severe CFS/ME Shared Clinical Practice Document version 1 January 2017 (33). Again, shows this problem of understanding those who are severely affected they state:

“we will define severe CFS/ME in adults as a level of CFS/ME in which the person is housebound, unable to mobilise without a wheelchair, or bedridden”

They quote the NICE guidelines approach.

No part of health and social care is separate, and this includes the Family Court. You are all joined and need to know each other’s part to be fully informed and safeguard our children from all forms of abuse; be it emotional or physical from medical, professional or parent. However, it is the voices of those that have gone through the system that need to be heard with urgency.

NHS staff, researchers in CBT and GET and NICE along with the courts have learnt nothing since Ean Proctor (34) or the loss of Sophia Mirza (35) who died before the 2007 NICE guidelines and as they were recruiting for the PACE trial. Yet NICE did not mention this illness can cause death, which for all these years has clouded the reality of ME.

Merryn Crofts died in 2017 (36) and still NICE are not making it easy for those young people with severe ME to be heard. How many more have been lost or near to death due to the lack of explaining the seriousness of ME and PEM and get hidden?

Jessica Taylor-Bearham (37), Naomi Whittingham (38) were young and vibrant children who have battled decades of abuse, all documented and filmed. Clair Norton and family members are vocal and experienced and yet the courts will never hear their voices. Unless you have read my account.

When children and their families over decades have not been listened to by the courts, it shows how deaf professionals can be. Out of 180 countries the UK are now at 178 (39) when it comes to enabling an environment for Child Rights. The indicators that these rights are being upheld include non- discrimination and respect for the views of the child. Children with health conditions that are little understood are discriminated against very rarely have a voice. Those voices are there, they are just swept aside by the system. If journalists do not pick them up, no one else seems to.

Dr Melvin Ramsey in 1986 could diagnose and pointed out that if the patient does not convalesce after the initial onset the consequences could be “Catastrophic” all the biomedical research point to the fact he was right. He explained about the fatiguability of ME as we understand PEM today. So why do not the whole of the medical, mental health, educational and occupational professionals understand the PEM state, so that they can explain to the courts? Why are the courts not fully informed already about this illness and the deaths that can occur?

ME is the main reason we are told that children are absent from school. So why is it so little understood and why so many false allegations?

Why are we told that CAFCAS has an outstanding by OFSTED when OFSTED are aware of the deep problems? Why is SEND (29) is in such a state with lack of understanding of ME as a disability and those three organisations are linked. Why are they not seeing the discrimination that this illness is steeped in?

Furthermore, those that promote FII are able to take my ability to complain about the abuse I suffer away on no reliable open research that they can be quoted. Clearly, they have got it so wrong with ME and PEM and after decades of evidence I do wonder what it will take for those professionals that say they care to give the right protection to our children.

I am unable to move to different doctors to find one that is competent in a complex field. Unable to complain to PALS due to everything I do is put under scrutiny. They can use my email to access my online media platforms and yet the corporate parent is under no such scrutiny and can abuse, harm and let deaths occur and they are protected as a professional. Imbalance is my reality and I am one of 25,000 mothers just in one illness.

There has been no further safeguarding of those children that die at the hands of their parents (40). In Northampton two more children paid the price of an inability to tackle abuse suffered in plain sight of the professionals.

Society and the structure that is there to protect children has failed those young people with ME and PEM for decades, while some organisations rejoice in the good that they do, sweeping aside the mistakes made.

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24. Edwards, Jo. Virology. Trial By Error: Professor Edwards’ Letter to BMJ’s Dr Godlee About the LP Study. [Online] June 3rd, 2019. http://www.virology.ws/2019/06/03/trial-by-error-professor-edwards-letter-to-bmj-dr-godlee-about-the-lp-study/comment-page-1/#comment-53210.

25. Royal College of Paediatrics and Child Health. Royal College Of Paediatricis and Child Health. [Online] October 2009. https://www.rcpch.ac.uk/sites/default/files/Fabricated_or_Induced_Illness_by_Carers_A_Practical_Guide_for_Paediatricians_2009.pdf.

26. Mendoza, MK. Dr Terry Lynch Shifts the Paradigm in Mental Health from "illness" to "Distress". [Online] June 20th , 2019. https://www.ksfr.org/post/dr-terry-lynch-shifts-paradigm-mental-health-illness-distress-part-one.

27. Frank-Keyes, Jessica. https://www.edp24.co.uk/news/health/norfolk-suffolk-foundation-trust-kirsten-cunningham-anorexia-1-5903800. [Online] February 23rd, 2019.

28. OFSTEAD Education inspection framework. [Online] January 2019. https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/802471/Research_for_education_inspection_framework_160519.pdf.

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30. CAFCASS. How do we better understand the cues and clues to assess emotional harm and ensure children’s recovery? CAFCASS. [Online] June 28th, 2017. https://www.cafcass.gov.uk/2017/06/28/better-understand-cues-clues-assess-emotional-harm-ensure-childrens-recovery/.

31. Hansard. Treatment of ME/CFS. Hansard. [Online] January 2019, 2019. https://hansard.parliament.uk/commons/2019-01-24/debates/FA1BBC27-37A7-4BFD-A2C0-A58B57F41D4D/AppropriateMETreatment.

32. Paediatricians apologise but they don’t identify the “muppet” who came up with title for today’s conference | 18 May 2017. ME Association . [Online] may 18, 2017. https://www.meassociation.org.uk/2017/05/paediatricians-apologise-but-they-dont-identify-the-muppet-who-came-up-with-title-for-todays-conference-18-may-2017/.

33. Group, BACME Working. https://www.leedsandyorkpft.nhs.uk/our-services/wp-content/uploads/sites/2/2017/04/British-association-for-cfs-me-shared-clinical-practice.pdf. [Online] January 2017.

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The Care and Quality Commission

2018-11-29T02:48:00.001-08:00

The care and Quality Commission asked if anyone had regretted not complaining and went on Twitter.

https://twitter.com/CareQualityComm/status/1067697100685635584

Engagementandinvolvement@cqc.org.uk

I had 101 things to say but here is my reply:

I wished I could complain but the system is stacked against ME

I am a mother of a 13-year-old boy who has severe ME. There are more systems wrong with his body than I can count, and his reality is denied.

He has been bed/housebound from the age of 9, ill from the age of 8. He is one of those people who could never sit still, his illness has not changed his personality or his need to climb and fly, his body has severely clipped his wings though.

ME is a political illness with treatment of CBT and GET attached strongly to the insurance industry and Department of Work and Pensions and therefore the governments over the last 3 decades.

No research grants from the GMC into the biological cause of ME is awarded and those that suffer are left to find the unbelievable history of this illness themselves. With all known helpful treatments denied to the patients. Even though I have a good grasp of this illness I find it difficult to ask for help from my GP. This is because of the misinformation being given on how to diagnose ME and the cause.

Furthermore, the wrong treatments advocated by those that refuse the evidence of the biomedical and physiological problems of ME, with treatments that are put forward as a cure or help with symptoms make my child worse. I do complain to deaf ears due to empire and self-interest.

This system of “protect some professionals at all cost”, causes untold damage to very young children like my son, with many silently nursing professional abuse of Fabricating and Inducing Mental Illnesses on young children that triggers PTSD. To deny a child’s truth is unforgivable. The history over 3 decades tells their story, openly shared on Twitter, YouTube and social media, in government documents and the general media, like the 3 wise monkeys’ organisations such as yourselves see, hear and do not speak of the evil that is done to our 25,000 children. Happy to gaslight us as women and as mothers with mass hysteria tag that hides the ME, EDS, autoimmune epidemic, thyroid and heart attacks.

Mothers like me are aggressively targeted as scapegoats and accused of Fabricating and Inducing Illness (FII), our family courts are given false information about this illness by those that believe the Camelford Water incidence was a form of mass hysteria and caused no damage, oil spills in Scotland had no harmful effect and were greatly helped by not being given to the press - thus avoiding mass hysteria. Women are gaslighted about their pain and if they are a mother it is naturally assumed; if their child remains ill - it must be down to them, professionals are always right?

You could not make up the Camelford water incident and the illogical reasoning was addressed? Oh no the person who put forward the illogical was promoted and is given a review of the mental health of our county? what does that say about our healthcare and the mental health care in our country? Forensic biomarkers are there and respiratory, liver damage along with a decrease in immunity, increase of cancer and higher levels of toxins, yet we pay no attention to the human cost. Blame it on mass hysteria.

When I complained about the hypocrisy to the GMC so they may look into the trials, treatments and history that have led to this impossible situation, they said they would do nothing. However, I could complain about the individual doctors who had misdiagnosed my son and given him inappropriate treatments. I do have a strong case but for 2 very important reasons I do not complain, but openly speak of the truth.

1. With misinformation and the history of denial of the facts about ME. Along with underline political agenda, a complaint would put my son under threat of being taken away from his loving family. Some professionals will stop at nothing to hide the truth, the harm to children unrecognised. They try to get good doctors stuck off. The GMC are aware of the situation with some Doctors being sent to them 28 times.

2. Why should I complain about well-intentioned doctors who have been misinformed about this illness and not taught how to diagnose or treat properly? CQC, NICE, NHS England, Government are responsible and are aware, so nothing will change until you do.

How Have We let This Happen Again? Forced Adoption

2018-09-17T02:38:00.001-07:00

How Have We let This Happen Again? Forced Adoption

On Tuesday 11^th September 2018, I attended a seminar in Westminster with a determined, courageous and inspiring group of mothers who have come together and created the support/campaign group @Fiightback.

This Seminar was organised by Legal Action for Women a grass roots legal service. LAW have worked tirelessly since their creation in 1982 to enable women who have historically been silenced get their voices heard and their rights recognised.

This seminar was called “Do NO Harm”

One of the guest speakers at this seminar was Mr Andy Bilson Emeritus Professor of Social Work at the University of Central Lancashire, who is working on the rising levels of children going into care. Professor Bilson spoke about the increase in child protection figures, which alarmingly in children before the age of 5 is now at a staggering 1 in 16 children. Professor Bilson went on to clarify that equates to a staggering 52 % rise in adoptions before the age of 5. These are truly astounding figures.

Here at Fiightback, we are seeing an alarming increase in child protection cases involving children with chronic and complex illnesses along with children with autism. It would appear mothers/parents seeking appropriate statutory support (EHCP’s) due to the multisystem needs of their children seem to be targeted for Fabricating and Inducing Illness; a new term for the old Munchhausen Syndrome by Proxy.

I was shocked when listening to the first hand personal accounts of these proceedings, which were read out by courageous but still clearly traumatised family members. Emma Lewell-Buck MP, Shadow Minister for children and Families also gave a stirring speech about how the practice of forced adoption has been reinstated. It took me right back to the 50s 60s and 70s and I ask the question how could we let this happen again?

How have we regressed back in time from a point where the Prime Minister has issued an apology for those children harmed by forced adoptions in the 50s – 70s, to where it is now happening again for no good reason in 2018? Support is what is desperately needed in our society not separation.

Draconian measures are being ratified in both the USA and UK, an outcry went up when Donald Trump took children away from mothers in the US and yet the state can do the same here and we hear nothing?

Our support system is now turning on families aggressively harming innocent children without due care, understanding or process whilst other countries look on with astonishment. We should be hanging our heads in shame.

When people like Lord Nash, former Conservative Parliamentary Under Secretary of State for Schools and co-founder of the charity Future, are sponsoring academies that are running out of control. Is it really surprising that we find our education, health and social care doing the same? It has now been revealed that the same thing is happening with forced adoption, which was another reform Lord Nash was calling for.

In the Queens’s Speech the UK Conservative Government introduced a Children and Social work Bill. This was to ensure that children could be adopted into new families without delay. It was supposed to improve the standard of social work and opportunities for young people in care in England. The resulting reality is anarchy and misuse of forced adoptions.

We then come to supporting a child’s needs when in the care system. Care for sick children is wholly inadequate with children physically unable to take a shower for themselves, they are often left alone with no education, no healthcare provision or dental appointments, all because they have conditions that are little understood and do not get me started on how they are viewed by professionals.

Dr Speight, a leading and world-renowned specialist in Myalgic Encephalitis (ME) a complex condition with many systems that have dysregulation that makes the condition complex and hard to understand, also comes under attack from other professionals who use the system to their own gain and advantage. Dr Speight has never shied away from protecting children, but he often suffers due to putting his head above the parapet as the NHS whistle blowers do, he explains:

Parents naturally move heaven and earth trying to get a diagnosis and the “treatment”, often needing several “second Opinions”.

When the treatment doesn’t work or makes the young person worse the parents are blamed for withholding from treatment.

He goes on to say

I’ve seen several cases of proceedings driven almost certainly by a desire for revenge on the part of the professionals.

Dr Speight has attended 20 families accused of FII in the last 5 years who have been taken to case Conferences. The wretchedness of having an ill child who is deteriorating with no treatment, let alone fighting the system is utterly devastating. With Tymes Trust having over 200 cases of families being falsely accused, at some point someone somewhere must look at this situation and recognise the system is not only failing but is not fit for the purpose that was originally intended.

We hope this seminar will provide the long overdue recognition this issue demands.

We have to stop the rot and discrimination.

Listen to those that know Dr Rowe from the US and DR Speight from the UK

http://voicesfromtheshadowsfilm.co.uk/paediatric-mecfs/

Both have written in the world renowned 2017 paediatric

https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full

Time to hear the voice of mother and more importantly the child.

2018-08-29T08:31:00.000-07:00

Family courts and family law in England and Wales are to make things clearer?

How is this going to work?

Will the voice of those that matter be heard? That is the young person, their prime carer – mostly their mother and the family unit. Surely their voices are more important than any others? Yet we never hear those voices or rarely and mostly only when devastation has caused outrage.

Is it about time that changed?

What studies are there that look at the mother’s instinct of their child’s health and wellbeing and how correct are they?

How many times have hospitals got it wrong and the mother right? I would suspect that this is never noted down. This I would suggest is where we go wrong. Not getting to the truth of a situation leads to misinformation and the same mistakes being made.

How can we be sure we know all the facts and have balance if the family, mother or child's voice is never heard. It is only when the child is 18 that their voices can be heard and by then it is too late to make amends for the damage done.

Now consider - how much research has been put into how mothers negatively impact on their child/children? This is all done from a very vacant and technical viewpoint that has nothing to do with being human, sensitive or empathetic.

One illness that for decades has not been listened to is Myalgic Encephalomyelitis (ME) the history is filled with academia and bizarre beliefs like "malleable brain" and "Neuroplasticity". If these theories worked then eating chocolate would always give you a happy buzz or you would never eat it as you have trained you brain and conserve your hips, brain training games would make me a genius and our educational system would be the finest in the world. However, we are more complicated and have amazing ecosystems and cells that entwine with such delicate complexities to untangle will take more than just saying I am happy and making life better.

Why is it that one illness taken over by those that think they can control our DNA, Cells by denying the reality of the patient and why did the NHS fund such a trial

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3049137/#__sec6title

To view a mother/parent in such a manor when their child has a disease that is disruptive and puts all of their bodies systems out of kilter... well words quite frankly fail.

How can you advertise a trial as a treatment that most will recover at 6 months in the first place and no authority think this is wrong? Trials are set up to prove or disprove. All of the trials on children with ME do not record harm, do not give heart rate monitors to make sure children keep under the anaerobic threshold. Those that research on children with this devastating disease cannot or will not explain they cycle of Post exertional malaise (PEM) and why even doing a small dot-to-dot can have the same response as walking a mile. Why convalescent rest is needed after activity and in a PEM state and how or why this happens. They do not track the PEM cycle and they do not make if the child has more time with feet on the floor time.

For a researcher not to know why this is important in ME is unforgivable.

To call our children MUPPETS is beyond insensitive and yet they can openly do so, who is there to stop them?

On their flawed science so the courts make their decisions about the parents behavior. The authorities are OK with this?

The difference between the lived reality and that of academia is acutely astounding. If there were studies into how the mother’s instinct makes a positive impact on the outcome of long-term conditions, or acute ones, I wonder what we would find. How many deaths would be avoided if the mothers voice was acted upon with more respect and urgency?

Sir John O’Hare QC who headed up the 14-year-old inquiry into avoidable deaths of young children, in the Royal Belfast Hospital said (I will paraphrase for brevity) “there was an “indefensible” culture in which parents were “deliberately mislead” by doctors and health trust chef’s intent on “avoiding scrutiny” and protecting their own reputations.”

How is there going to be clarity within the family courts, when no one listens to those on the receiving end of bad practice or false allegations?

Does the public understand the position parents are in with the court restrictions, when they are accused of Fabricating and Inducing Illness (FII), even when proven innocent? How does that position impact on parents when they are trying to pull together professionals, to get the right treatment for their child.

I was recently told by the GMC that there is a differing opinion on a condition my son suffers from. Healthcare should not be about politics or opinion, but on individual medical history and research along with no more harm and probability. No one said healthcare was easy.

Avoidable suffering and deaths are happening to children throughout the healthcare system and most are covered up with accusing the parents of FII, belittling or gaslighting them. As Sir John O’Hare QC suggests; a culture has been allowed to build up.

What are the courts going to do with the misunderstanding over complex cases and where fraudulent or flawed research give the wrong treatments or advocates procedures that are causing harm or death?

Covered by clever and manipulation by academia and not balance of all facts of known experiences hampers diagnosis, treatment and informed consent. This also gives both professionals, barristers, lawyers and courts along with the public the wrong idea about FII or the relationship of a mother to their child, and of a child to their mother. This normal bond of care is being broken for gain or an agenda well meaning as it might be. The voice and experience of the parents are not heard and therefore no balance. How do we get balance back?

There is no common law duty of care to parents, this has I believe, led to the explosion of FII. FII is used as a method of “avoiding scrutiny”. Have courts; trying to protect children, now becoming a weapon used against parents?

The mounting case of parents with children that have hidden illnesses accused of FII:

Chronic Fatigue Syndrome (CFS) and the PACE trial is a battle of establishment Goliath against a severe hidden illness. Over 200 parents accused of FII (again mostly mothers but not exclusively) none have been found guilty. You just need to look at the Tymes Trust webpage to see a condition that sucks the life out of our children. The Tymes Trust have been battling against an opinion without foundation for decades now. Many children would have been lost if it were not for the Tymes Trust tireless efforts.

CFS is a controversial name brought in to mask Dr Ramsay defined ME.

The main telling sign of ME is that symptoms are exasperated by any form of thinking, day to day task or emotion - that can be getting excited and laughing as much as feeling confined by the lack of energy. Basically put, anything that uses energy takes it out on the body, similar to diabetes.

A misconception that has been heavily played upon, is that avoidance of exercise was the problem. When this did not stick, it was avoidance of living or depression. Then came the deconditioning theory. You cannot image the damage this misconception has caused a whole plethora of illnesses. This has enabled many to Gaslight a whole community of the invisible illnesses/disability.

The truth is; as anyone who cares for a person with ME knows, there is a cycle that cannot be replicated by just an emotional outburst of unwillingness - of not wanting to engage with life, it’s called PEM, and is how you can diagnose ME. Ramsay explained that ME had an alarming tendency to become chronic when a small amount of energy is consumed and which takes a prolonged period to regain some energy back. This is now being taken very seriously in research terms, but it has taken from 1986 to now, to be seen as the path of discovery.

The PACE trial in 2011 set out to prove along with the DWP and the MRC, that this condition was treatable with Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET), this trial data was not released openly or freely, as they said they would. Instead the community had to force the data to be released while being charged as vexatious. Appalling accusations freely heaped on those that suffer, by the media and recently Executive Chair of the MRC Professor Fiona Watt.

The data from the PACE trial now reanalysed by many, has been shown to be steeped in flawed methodology. Even though the harm of those treatments are in plain sight in rooms all around the UK, they and their suffering are dismissed.

To cover this appauling use of research children are being made to pay the price. Further research promised to show this is still a valid treatment and so the DWP and MRC can hold their

Ehlers-Danlos Syndrome (EDS)

This is a genetic condition difficult to diagnose due to opinion, lack of understanding and funding into research. Again, doctors are targeted and sent to the GMC as with ME if they try to help with differing treatments and stand up for those that suffer. EDS has never really been given the attention it deserves, just like ME. Children can end up being tube fed and put in mental hospitals due to lack of understanding.

We do not know if vEDS is as rare as we are told, but we do know life expectancy is shorted due to vascular rupture, with median life span of 48 years. though this does and can happen at any time as even young people die as a result of a rupture. Why are courts ready to hear that parents are saying symptoms are worse than they are and keep taking children away from loving homes? Why do we not keep a track on their progress? These children are lost and forgotten in the system unless the mothers/parents fight hard and long battles. Simply trying to get tests can leave parents under threats as doctors are being taught to look out for these conditions and mother fabricating the complexity and severity of them. What hope of a diagnosis is there?

Mast Cell Syndrome (MCAS)

This is an immunological condition with near-anaphylaxis or anaphylaxis attaches. Why are so many of these conditions put down to anxiety. Mast Cell inappropriately release chemical mediators which result in a range of chronic symptoms and is rarely looked at. Again, this condition would take endless visits to doctors to get a diagnosis. There is a blood test looking for Tryptase; a protein that is usually elevated. Ultimately a bone marrow biopsy is the definitive test. Hopeful one day as with celiac this will become just a blood screening that is easy to do. Unfortunately, the symptoms are just linked in with mental health issues and the new Improved Access to Psychological Therapies (IAPT) so now parents have a bigger problem.

Post Orthostatic Tachycardia Syndrome (POTS)

Again, this is complex, and little understood to how prevalent this condition is and has been dismissed as a condition of little significance. The research would suggest otherwise. Thought to be anxiety driven it is now proving that it brings on anxiety due to the change of heart rate and blood pressure, with adrenalin surges. Mothers are again suspected of saying the condition is worse than it is, but when you consider the symptoms are so vast and some mimic heart attack, could you really blame mothers for their concern?

Lymes

This is caused by a tick bite and there are many symptoms with many reports of problems throughout the body. Although there is a blood test, this is very rarely asked for, and is known to be ineffective in many cases.

We should have learnt lesson from the Cot deaths and shaken baby syndrome

These are now recognised as having many causes and why babies are given Vitamin K. If these cases had gone unchallenged, we would still be blaming the parent, mostly it has to be said the mother.

How many children are caused undue suffering or die in care of these complex and intertwined conditions. How many parents unprotected by laws and are seen as insignificant collateral damage that protects children?

Are courts and research doing more harm due to lack of balance, when the voices of those that count the most are silenced.

It is now time to hear the voices that give the balance back to society, the voice of mother and more importantly the child. Will this ever happen?

My Open reply to the GMC regarding Dr Myhill's complaint.

2018-08-23T08:48:00.000-07:00

On the 9th February 2018 I sent a letter supporting Dr Myhill's complaint to the GMC.

I received a standard reply that made no sense and here is my open reply back to them. A bit long but it is a big issue.

Dear Sir Terence Stephenson

Nuffield Professor of Child Health at University College London

Chair of GMC

Thank you for your considered response from Ian McCann, and I am glad you took your time to carefully review our concerns as there are 25,000 children’s lives at the heart of this long drawn out matter.

I can assure you I am not disappointed, neither am I surprised by your inaction to my concerns, nor was the 250,000 adults or the parents of the 25,000 children in the UK, who deal with this condition on a daily basis. All those around the world have long anticipated your reply. I guess, it was just a step we knew we had to go through. Furthermore, I am very used to the standard reply you gave me and that speaks volumes.

I am an patient Ambassador for Children with ME as part of #MedLearn, which is about shared learning between senior healthcare professionals, patients and carers’, I am one of the stakeholders on the NICE guidelines and am on the Community Engagement Partnership in my area, as well as a mother with a son, who has suffered by the training given to our local medical staff, by your listed trainers.

I take my roles very seriously and when I see harm being done, I report it and support those who would like to help make a better NHS, based on good governance, mutual respect, and a learning pathway that is open and honest.

There are over 25,000 very good reasons why I do this.

In my roles I read many papers and talk to many researchers and doctors all over the world. ME is not an opinion, a personal view or caused by psychosomatic reasons. ME is a very complex, multi system, debilitating and life-threatening condition, of which the research and understanding is being held back by some of your training members. Dr Ramsay tried to defend ME against fabricating and inducing mental illness on those that suffer ME, sadly he failed.

Can you confirm that you are not going to make those on your register; whether they be a doctor, on your special register or trainer to uphold their duty of candour.

· Speak to a patient, or those close to them, as soon as possible after they realise something has gone wrong with their care.

· Apologise to the patient – explain what happened, what can be done if they have suffered harm and what will be done to prevent someone else being harmed in the future.

· Use their professional judgement about whether to inform patients about near misses – incidents which have the potential to result in harm but do not.

· Report errors at an early stage so that lessons can be learned quickly, and patients are protected from harm in the future.

· Not try to prevent colleagues or former colleagues from raising concerns about patient safety. Managers must make sure that if people do raise concerns they are protected from unfair criticism, detriment or dismissal.

Dr Ramsay in 1986 said that this illness has an “alarming tendency to become chronic”, so we have always known that harm can be done to patients who are not listened to.

Dr Wakefield; who you struck off your register, the GMC stated he “abused his position of trust when conducting research” his “dishonest irresponsible and showed callous disregard for the distress and pain” cased to children. So why in your letter do you state to me, that you will not be taking the matter any further at this time? Who are you protecting? It is not our children. Please explain your actions and your obvious misinformation you gave me. You also quoted at me that, “An investigation can only be opened if the concerns raised are so serious that the doctor’s fitness to practise medicine is called into question.” Thousands of innocent patients are waiting for this clarification of why the difference between Wakefield and PACE trial authors, Sir Wessely, Crawley, Glaser, Parker.

It would seem to me you have not protected this group of patients, some of which are very young and vulnerable children, and I feel breaches the Ill-treatment and wilful neglect offences Act 2015?

You have enough evidence historically, through the parliament questions and Westminster debates along with children who are no longer able to live life, other than in an extremely constricted way and in constant pain, neglected by all medical professionals, due to the lack of understanding promoted by the PACE trial authors and supporters. 25,000 good reasons why the status quo cannot be allowed to continue. You need to give a full account of your inactions to the public.

Sir Robert Frances QC “Every time a patient or a colleague is deceived, intentionally or otherwise, public confidence in the service can be threatened”. I would suggest in this matter it has gone.

False allegations are thrown at parents with children that have hidden disability or chronic conditions which ME is one. It co exists with, EDS, VEDS, POTS, Mast Cell Activation, Celiac due to the misinformation issued by trainers on your register, these children are wilfully neglected. This is caused by medical teaching by your approved trainers.

This causes immense physical and emotional damage to the whole family, not just the young patient, and lasts a life time, like any form of abuse.

FII is being used as a form of abusive control, a weapon in two ways. Firstly, to make parents do what those that have full control of ME/CFS recommends, including pushing children on research trials and secondly when things go wrong to blame the parent, and hide their misconduct/misdiagnosis/ lack of understanding.

When parents are innocent, their innocence and what went wrong is never looked into publicly, due to the secretive nature that has been allowed to build up around FII; even when the parents have been publicly announced as abusers. The harms caused by those on your register as trainers, train medical staff in their beliefs that goes against all the biomedical research, as I mentioned in my complaint and this is growing.

Giving the wrong treatment to a large group of patients is against duty of candour, not reporting known harms is against the Shipman report, and not learning from historical mistakes is against humanity and informed consent.

Am I given to understand that you think as an organisation you are above all three?

Who are you protecting? It is not our children and you are showing callous disregard for the health and wellbeing of over 25,000 children around the United Kingdom.

I am aware you have connections with Bristol University and Oxford, so you will be aware of the historical problems of over 30 years of pushing CBT as a treatment, with no obvious rewards to patients. With nearly every trial being flawed on many levels.

You state your Role is: to oversee medical education and advise on good medical practice. So therefore, a fitness to be a trainer and to educate others, is within your domain of governance.

You are a public body, so therefore it is your public duty to protect the medical staff on your register from being misinformed and to stop bad practice by those that educate in their specialist field.

You are there to protect the public from harm? Since 2004 patients and some researchers along with doctors, have been talking of systemic harm with treatment of CBT and GET on those that have ME/CFS. That is 14 years and still you do not listen.

CBT is being rolled out for all conditions and is part of the IAPT, so this truth needs to come out as the country pays for this wrong approach in two ways – misdiagnosis leading to harm/death as patient’s symptoms are not being noted as important and financially when therapies through their own research shows that CBT has no positive effects, therefore a waste of public funds.

It is my opinion you have failed in your duty of candour. You are allowing further harm of those that suffer and of newly diagnosed to go through the same rehabilitation nightmare. You have been informed of harm, biomedical research historically and new, has consistently proven dysregulation in the many systems and the harm caused by a two-day CPET test. Yet you have chosen not to take action, therefore the known abuse continues. You cannot call it different opinion? You are now a party to that abuse, by your inaction of governance.

could you please explain the following to me -

When I looked on your register I find that Simon Charles Wessley is Reg no 2724740 is an approved trainer by yourselves. Please confirm this is the same Sir Simon Wessley with many accounts of his medical gaslighting towards patients verbal and written, carers, Doctors, advocates, journalists, professors and reviewers. His views are biased to the point of… well words fail. When you look at his fixation on Mass Hysteria with his paper on the Camelford water poisoning, Gulf War Syndrome, I am perplexed that he is still training medical staff. VEDS (life expectancy of 43 years and goes undiagnosed and allowed to be called MUPPETS), Lymes and ME are not any form of hysteria, they are physical conditions interlinked and with little biomedical researched done due to the views of a few. If these physical conditions cannot be picked up by biosocial lobby, there is something very wrong with our teaching of medicine. Tick bites and associated known illness along with shingles, have been around for many years, and their complex affects on the body known. Therefore, it is absurd not to look for causes and find facts of ME and just treat with increased activity. Even more so when the cardinal diagnostic difference in this illness is that the body starts to shut down 48 hours or so after any form of activity and not just physical activity, I go back to Dr Ramsay among others.

On your register is Michael Christopher Sharpe 2673545 Please let me know if this is the same Professor Sharpe who was part of the PACE trial. Recently his behaviour has been in the public and Parliaments eye with regards to the email sent to Carol Monaghan MP. His disputed work is the one quoted as evidence based and forms the opinion, and I would suggest education of the medical profession as a whole. Professor Sharpe had four papers as evidence for the Occupational Aspects of the Management of Chronic Fatigue Syndrome: a National Guideline 2006, I wonder who reviewed these papers. His methodology has been again questioned in the awful named trial of “Fatiogo” and on the NICE guidelines list of possible papers, so the problem perpetuates. There should have been a halt to his ability to do research, as you did with Wakefield. Public confidence is being lost in science, when the GMC do not administer governance or balanced discipline.

Esther Crawley 3545946 who is the lead researcher with the biggest grant in the UK for ME/CFS, that leads physical trials on vulnerable children, with little to no understating of co-existing conditions like POTS, VEDS, EDS Mast Cell and calls these conditions MUPPETS. The lead researcher on the SMILE trial, MAGENTA and FITNET-NHS - inform me what apart her trials play in your educational material. Medical staff not taught the relevance of POTS testing or significance of using heart rate monitors. This goes against NICE guidelines that she is very fond of quoting.

As with the Fatiogo trial if monitors are being worn what assurance do we have they will be a reporting outcome in her trials? or just hidden as with the other trials she has done? Harms are not listed and let’s remember anaerobic threshold that a normal athlete would reach at high peak intensity training, is reached doing daily tasks with these children, so harms would occur, breathlessness, chest pain and irregular heartbeats, causing distress and anxiety to young children. This is harmful with children that suffer both ME, POST and VEDS/EDS/hypermobile joints, this is of great concern. Dr Ramsay in 1986 defined ME with them in mind. The number of children made bedbound by treatment shows the harm and these need to be reported to enable medical staff and parents to understand ME better and be able to give informed consent.

This is without the way in which children are recruited. David Tuller can advise on the unethical approach. Wakefield only enlisted the help of a few children; Professor Crawley enlists the help of so many more; 700 on this new trial. Advertising to doctors of recovery even before she has started the trial. How can she possibly predict the result? Trials are there to prove or disprove, not assume the evidence will be there before the trial starts.

The SMILE trial was based on a private companies’ secretive approach and that once used tarot card reading as an aid to diagnosis? The cost of this treatment is well above what the NHS would spend on treatment for ME sufferers. This is wasting precious resources. How did any of her trials gain ethical approval, as reading the letters of concern is sad reading indeed with yet again many world renowned doctors and researchers signing an open letter.

Could you please confirm that Danya Ruth Glaser Reg no: 0291660 is the same who is also on the specialist register and recommends children having tantrums should be looked as possible FII cases, and also helped on the NICE guidelines with regards to FII.

As Alec Shelbrook has said “this was a clear example of a governments body over stepping their brief” as he explains “blurring the lines of abuse and normal childhood behavior”. This will make the lives of parents with children that have autism extremely difficult. Now she seems to be targeting parents with children with ME/CFS, MUS and probably the new FND. Why?

There has been great concern with how children with autism have been treated, again with many avoidable deaths. Many parents who have children with complex needs are being gaslighted with their concerns and knowledge.

Melanie Parker Reg No: 2639880 could you confirm this is the same Parker who works with children with ME. If so, why is she also instructing professionals on how to accuse parents of FII when they have a medically diagnoseable Neurological condition as listed by the WHO. This shows a distinct lack of understanding and is harmful to children, their parents and their family life. I know of parents that have children that go to her clinic, now feel very threatened.

All five have either completed research or training that has formed medical understanding, influenced medical education and public opinion, endorsed by the GMC. They have influence/control over Choices, NICE, NHS, Science Media Centre; who protects Esther Crawley from her fictional abuse stories; as none of the abuse she openly talks about has been proven and one poster she used in a Bristol TEDtalk was made up, and which the artist asked her not to use. Getting paid to educating public, medical, dentists and police staff. This is your responsibility to correct the institutional and medical gaslighting of a group of patients, whose parents have no power to speak out. Your control is over the register of authorised trainers, specialists and doctors, why have you allowed this behaviour to continue?

The History and the evidence of many young adults and children’s lives brutalized.

Sophia Mirza autopsy report should have stopped opinion and caused medical staff to do no more harm. The recording of her being forcefully taken from her home still astounds me. What action was taken by the GMC against those that wilfully and skilfully perpetuated the abduction?

Please explain to me how the findings of her autopsy could possibly indicate that rehabilitation would work, that it is not serious condition and why doctors are not informed of the gravity of ME. This was back in 2005 (the year my son was born). In 2018 doctors who tried to help Merryn Croft were left helpless by your trainers’ opinions and against all biomedical science.

That doctor endured what others would deny. That doctor should have been supported by the biomedical knowledge we have. How many more like Merryn are there, I know of many.

13 years of knowing the inflammation of the dorsal ganglia and the pain that can cause, and we do what? Oxidative stress, Cori cycle, ion channels, and how TRP channels are highly involved with our sensory and pain. Don’t you think we should proceed with caution with regards to rehabilitation methods of vulnerable children, and doesn’t take into account thinking is the same as running a marathon with ME?

Sir John O’Hare QC who headed up the 14-year-old inquiry into avoidable deaths of young children in the Royal Belfast Hospital said (I will paraphrase for brevity) “there was an “indefensible” culture in which parents were “deliberately mislead” by doctors and health trust chef’s intent on “avoiding scrutiny” and protecting their own reputations.” I would suggest this whole affair is showing the same signs of avoidable suffering, not only within ME/CFS, but also EDS, Lymes, MUS, autism and FND and should and could be stopped now.

If we look more closely as with Karina Hansen (Denmark) who was taken away and suffered enforced rehabilitation and drugs that she did not need. Her parents were left helpless while abuse on their child was carried out. When parents are accused of FII they have no say and are silenced by the medical professionals. The trauma and sheer sickness of this act is being carried out throughout the UK. In Karina’s case, they have now asked another Doctor to come and look at her and what did she find:

On the 9^th July 2018 psychiatrist Dr Charlotte Emborq appointed by the court in Holstebro to make an independent assessment of Karina’s health and her capacity to manage her own affairs. We do not have the full report, but what has been made public and shows:

“Karina does not suffer from any psychiatric illness. She does understand the role and purpose of her court-appointed guardian and she would like him to be removed from her case. She was found to be capable of managing her own finances.

How many children with ME languish in mental Hospitals in the UK, caused by your blind eye to other research and bias on someone’s considered opinion. How much suffering did Karina endure, we can only imagine but we can listen to Sophia Mirza and her mother. Read the reports and how they tried to take the good doctors who protect her down.

I am sure you are aware of how this is in the UK, as Dr Myhill has been taken to the GMC, is it 28 times? She has been stopped from speaking the truth as quoting from her book “I was heavily criticised once for stating that my CFS patients were in heart failure – this was considered an alarmist statement which scared patients” Well let me assure you, it is not as alarming as doctors not taking it seriously and leaving a child in this state for weeks, or good doctors not knowing what to do.

You are aware of expert paediatrician Dr Speight and how they have tried the same with him. I suggest you ask his council on the FII campaign - that has been going on for years. By his good council you will be able to see how much damage has been done to the family structure, and security of family life within the ME fraternity. Mistrust against doctors, the NHS and the GMC is inevitable as the truth unfolds and remember 25,000 is not a small number of children.

If you ask Countess Mar of the forward for ME parliamentary group; who has been asking for information over FII reporting. It is clear there is no way of seeing how many doctors wrongly accuse parents of FII and find they have misdiagnosed conditions, misrepresented evidence, causing harm and death. Therefore, the learning pathway on this is NIL. We are down to believing the doctors, which has proven historically dangerous for patient safety, especially with regards to Bristol hospital where Crawley is doing her research.

The Tymes Trust has helped many of those accused with no parents being found guilty of FII and once again if you ask for Jane Colby’s council, she will be able to assist you, in making sure you have a full and unbiased opinion on the matter.

It astounds me that misdiagnosis with near death or deaths are covered up with false FII accusations on parent’s. When found innocent they still have courts gagging orders. How is this allowed.

This is taken from your approved Paediatric Community Child Health Curriculum and is put under behaviour which goes against the World Health Organisation. Please explain.

Understand the principles of treatment of chronic fatigue syndrome/ME and the need to engage the family with a rehabilitative approach. I do not see much engagement going on, I see forced harm.

You cannot blame the medical profession if they are not aware of an issue or wrong doing. Your education dictates a course of action that they follow on trust of your good governance. It is your responsibility with others to inform the medical staff of concerns, you must work as a team across all departments and the patient voice is the one you need to listen to, especially the children; past and present, so lessons can be learnt. We are not talking one or two children, or even hundreds we are talking thousands!

How can you in good conscience advocate to take well-meaning medical staff, that are following your recommended and approved trainers and approved educational curriculum, believing the structure and teaching they have been given, based on the PACE trial, (quoted at us as being “good solid evidence-based research”) through any complaints procedure as you advised me in your letter?

All or most hospitals list ME as a mental health issue of some kind or another and it is now being listed under “Functional Neurological Disorder” at a teaching hospital. It is obvious that no one is looking at the WHO definition of ME? Please explain why you do not re-educate these doctors under your register.

A quote from the email you sent me,

“The General Medical Council helps to protect patients and improve medical education and practice in the UK by setting standards for students and doctors. We support them in achieving (and exceeding) those standards and take action when they are not met.”

NOW PLEASE ACT UPON those words and inform me in detail with all the above points raised.

An update on Angus:

On Thursday 9^th of August we took my son to receive his blood test results ordered by the paediatric. Even though he bathes in Epsom salts several times a day, his magnesium was only just within the normal range. If I had not known about possible magnesium deficiency, what would have happened to my son in the past 5 years of his illness?

Low Vitamin D and liver problem have only just been found. Unfortunately, they do not understand the relevance of these problems. Yet even though he has celiac disease his Vitamin B has not been tested.

If they had known about Cori cycle and Julia Newton and Dr Myhill they would understand the importance and give emergency and concern for his health. They have not taken EDS seriously. Furthermore, the POTS that he is diagnosed with at my request and even when I show that his heart rate goes up to 160 when standing, his symptoms have been put down to a three weeks anxiety attack? Your teaching, your responsibility.

I have great empathy when a doctor or consultant looks at me with dumbfounded hopelessness to know how to help my struggling son. It is truly heart-breaking when good considerate doctors are so let down by the GMC and their approved trainers. For my son it is taking his life away one inaction after another.

Finally, this is what we face on a daily basis. These doctors are on your register and are causing untold harm with no safeguards for young patients and their parents. No homes or foster carers are educated in how to care for the sever ME young person, how can they be when doctors are flouting the rules that should protect the public.

This letter will be an open letter and I will endeavour to send to as many influential people as possible.

GMC Send Their Decision. It made no logical sense to me. Does it to you?

2018-08-23T08:26:00.003-07:00

So on the 9th of February 2018 I sent a letter to the GMC in support of Dr Myhill's complaint.

I am not a Ms and the last paragraph I really object to, which I have addressed in my reply which I address in my next blog.

They say they oversee medical education... Err research forms medical understanding and education?Or am I missing something here?

Dear Ms Rodwell

Thank you for your correspondence sent via email which was received by the GMC on 9 February 2018, addressed to Sir Terence Stephenson. Your concern was passed to the Fitness to Practise section to look at the issues you had raised. We have now reviewed all of your correspondence, including the original concern from Dr Myhill.

In considering your concern, we looked at the doctors who were involved in conducting or publishing information relating to the PACE trial, who hold current registration with the GMC.

After careful consideration, we have decided that we will not be taking the matter any further at this time. We’re sorry if this is not the outcome that you were hoping for.

Concerns about staff involved in the PACE trial who are not registered doctors

There are a number of other researchers listed as authors of the PACE trial. However, as an organisation the GMC can’t investigate concerns which do not relate to registered doctors.

Our role

Our role is directly related to the registration of doctors. Our responsibilities are all connected to keeping the Medical Register. We oversee medical education; we give entry to the Register for those suitably qualified; we advise on good medical practice while registered; and we remove or restrict registration in response to fitness to practise concerns where there may be a risk to patient safety.

An investigation can only be opened if the concerns raised are so serious that the doctor’s fitness to practise medicine is called into question to such an extent that action may be required to stop or restrict the way in which they can work to protect future patient safety.

The purpose of an investigation is to determine if or to what extent we need to restrict the doctor from working. We are not a general complaints body and we have no legal powers to intervene in or resolve matters for individual patients.

Reasons for our decision

We are aware that many people have strong views on the PACE trial and concerns about the way the research was conducted, collated and published. As an organisation we don’t have any involvement in setting standards and protocols for clinical trials. However, we do appreciate that there has been significant academic debate about the trial and its methodology and that a number of criticisms have been made. We have reviewed an extensive amount of information about the concerns raised, before making our decision as to whether we can investigate.

In addition to all of the relevant documentation submitted to the GMC raising concerns about this research, we are also aware that there was a Parliamentary debate held on 21 June 2018 which discussed the matter of treatment and research relating to myalgic encephalomyelitis, in the UK.

Our considered view is that these concerns are part of an ongoing academic and scientific debate, rather than matters which would raise concerns about an individual doctor’s fitness to practice, in the absence of anything which demonstrates that they had acted dishonestly or with intent to be misleading. From the information provided, we haven’t identified any issues that would meet these criteria. As an organisation, we wouldn’t be in a position to comment on the research framework of the trial, and whether this was fair and robust, as this is outside our remit.

Whilst we do understand why you have significant concerns about this research and the impact it has had, overall, we are not of the view that this would require us to open an investigation with a view to restricting the medical registration of any of the doctors involved in carrying out this research.

Concerns about the standard of care provided

In your correspondence you have said that you are the mother of a 12 year old child, who has had ME since the age of 8. You have said that you were not given sufficient information by your son’s GP to allow you to consider the various treatment options available and you are concerned that appropriate investigations for your son were not always followed up. You have advised that your son also experienced severe headaches amongst other symptoms, however, you consider that the possibility of him experiencing migraines was not then discussed and investigated fully. You have advised that your concerns about his treatment were often dismissed, and you were made to feel irresponsible for wanting to discuss his treatment in detail.

You have said that your son was sent to a multidisciplinary team and advised to have CBT and GET. However, after having this treatment you found that his condition declined further. However, when you tried to raise your concerns about these matters and in relation to the issue of Post Exertional Neuro-immune Exhaustion (PEME), you said your views were dismissed even though his symptoms had become worse. You have also raised concerns about the delay involved in diagnosing your son as having coeliac disease. We can see that you have also found that you were not given sufficient support to help manage his pain and discomfort.

We’re sorry to hear of the difficulties you and your family have experienced. We appreciate that many ME and CFS patients might have had a negative experience in the NHS, and that they have concerns about the way their condition is diagnosed and managed. We don’t wish to undermine these concerns in any way, however we’re not able to look at the overall care a patient has received, only the issues raised about specific doctors. In addition, we can’t investigate concerns about the availability of funding or services available from the NHS. It’s useful to remember that we can only open an investigation where we’ve decided that we may need to place some kind of restriction on the doctor’s practice. We don’t have any powers to intervene in a particular patient’s care, or recommend a particular treatment or that a referral should be provided to a patient.

We do expect doctors to be respectful to patients and their families at all times. Whilst we’re sorry to hear about the attitude of some of the staff involved in your son’s medical care, issues such as you have described would not usually be a matter for the GMC to investigate as a medical regulator. However, you can of course complain about these matters to the relevant healthcare provider, if you’ve not already done so, to allow any concerns to be addressed at a local level.

We‘re aware there is a broad spectrum of opinion both among patients and doctors as to the correct method of diagnosis for people experiencing ME/CFS, and the way the condition should be managed. We also know that patients are individuals and respond differently to treatments, and as a result there is no single way of managing ME/CFS which will work for everyone. As an organisation we’re not able to get involved in endorsing or recommending particular methods of treatment, or endorsing particular theories or research about the illness, as this is not part of our statutory role.

We understand that there are concerns about the validity and quality of the guidance relating to patients who have ME/CFS which is used by other organisations such as the NHS and NICE, as well as non-health care bodies, like the Department for Work and Pensions and various insurance companies. We don’t have any role in regulating social security policies, and aren’t able to intervene to tell other organisations to amend any current guidance documents which they use. You might wish to raise any concerns you have with the relevant body.

If you feel that any GPs or consultants have failed to treat your son on specific occasions then this should be raised with their employers at the GP practice, NHS England or with the relevant hospital trust directly in the first instance. Local organisations are usually better placed to look into these types of issues and can provide explanations and offer apologies if this is appropriate.Thank you for bringing these matters to our attention. We hope this explains the reasons for our decision and the kind of issues we are able to look at. We’re sorry we cannot help you further at this time.

Yours sincerely

Ian McCann

Complaints and Correspondence Officer

On behalf of the Assistant Registrar

Fitness to Practise Directorate

Direct Dial: 0161 923 6344

Email: fpddecisions@gmc-uk.org

2018-08-23T07:31:00.000-07:00

9^th February 2018

Sir Terence Stephenson,
General Medical Council,
Fitness to Practise Directorate,
3 Hardman Street,
Manchester,
M3 3AW.

Dear Sir Stephenson,

I am writing to you in support of Dr Myhill’s complaint against the PACE trial authors, due to their flawed research, inability to understand good conduct in science, and as professionals within the healthcare system.

They have knowingly and wilfully dismissed the evidence of biomedical research. Made persistent attempts to make sure the only treatments offered are their own. Their beliefs and their power have stopped nearly all biomedical research in the UK, discouraged new researchers in this field by putting undue pressure on researchers through various means, including inciting hatred towards Myalgic Encephalomyelitis (ME) advocates, and the sufferers.

Made vicious claims and attacks on the researchers, advocates and doctors who support the sufferers of, biomedical research into ME (Williams, 2013).

Withheld vital information from the medical professionals about the true findings of the PACE trial, to enable proper consent to treatment. Taken away choice form sufferers and their carers. Taken away from severely disabled people; including children the ability to have wheelchairs and disabled badges for cars, without suspicion of fabricating their illness, or that by offering such devices somehow this is going to have a detrimental effect on their progress. Taken away the ability to have any second opinion.

Wasted millions of taxpayer’s monies, and resources from the NHS, knowing their treatments do nothing, worse still are passive aggressive in design. Their actions are more akin to a mafia gang, than that of esteemed professionals.

How this group of health care providers can go against the Helsinki agreement in regard to the PACE trial, disregard the World Health Organisation listing of ME, going against all other independent medical opinion, with regards ME including, renaming and conflating diagnosis to that of depression with the Oxford criteria. Even after the case of Ean Proctor their manner with which they deal with children and their parents, have caused untold damage. Their ability to say what they like, is well documented over decades. Holding a different opinion would show an ability to accept the findings of the trials they have undertaken, and other esteemed researchers including Nobel prize winners, but they do not.

I am aware that NICE are changing their guidelines, as I attended their Engagement meeting on the 16^th January 2018. After this constructive Engagement meeting a post popped up on my Twitter feed Professor Sharp who attended the engagement, liked a comment which is appalling. “CFS/ME: Swedish couple lost hope, kill their children, commit suicide. Why? In part because of the intense negativity spread by individuals/CFS groups/researchers, saying cause is bodily defect and nothing can be done. False. The children could get well!” Although Twitter is a personal thing. Yet again they slander concerns of the ME community, and turn a blind eye to research and cherry pick facts. Karen Hansen and many of our children in the UK pay the price of this attitude.

Yet still Kings College London with their Mental Health Skills for non-Mental Health Professionals (IMPARTS) show a distinct lack of understanding and respect for physical illness, and its part on the mental wellbeing of the suffer. Irritable bowel syndrome (IBS); just to take one of their Medically Unexplained Symptoms that they list with ME/CFS, can lead to great harm if misdiagnosis. IBS can be one of the symptoms for a disease that can be easily tested like coeliac, to others such as bowel cancer, but get misdiagnosed given wrong mental health treatments which results in bad outcomes for both.

Personally, their behaviour; as with the Proctor family decades ago, has had a profound effect on me, my family and friends. On my son it has changed his forever in many ways.

I am a mother of a 12-year-old, who has had ME since he was 8. He followed the normal pattern and one that is still allowed to continue, perpetuated by the PACE trial. I was given no facts to make any reasonable consent to treatment; he was given no investigational tests other than the normal blood test. This blood test revealed a problem with low iron, but the consultant dismissed this as unimportant.

Due to Sir Professor Wessley involvement in the 2007 NICE guidelines, interventions or treatments such as Vitamin B12, Thyroid, SPECT or special MRI scans not undertaken or the understanding the relevance of in this disease. In our area of Suffolk low Iodine is a problem, but this gets clouded over due to many doctors taken to GMC repeatedly, for trying to help with such investigations or treatments. (Rayman, Professor Margret al et, 2017) (Rayman, Professor Margret al et, 2013) Professor Rayman uses The Avon Longitudinal Study of Parents and Children (ASPAC) as mentioned in many of Professor Ester Crawley’s work. Yet all her research is on increasing activity with no other medical interventions and holds the same beliefs as Sir Simon Wessley and uses the PACE trial to support her work on hundreds of children.

With a disease such as ME every little helps, unfortunately my son has a reaction to many shop brought vitamins, but due to the teaching of Wessley and his colleagues, all his allergies and Irritable bowel symptoms are dismissed. Healthcare professionals are only interested in anxiety and depression or school avoidance.

However, some medical professionals, healthcare and researchers are getting to grips with the importance of the microbiome of the gut. Their understanding has been held back by Wessley insistence that everyone should follow their belief systems into all physical illnesses such as ME, has a mental illness trigger. The reality is many chemicals within the body shoved out of kilter does influence your brain thought process. No amount of pushing through will mend that. Your moods can change with a Urinary Tract Infection (UTI) but without treating the infection you won’t make your moods better.

They also seem to get confused with the word stress. When you hold a heavy weight, you put stress on your body. You can be determined to hold the weight up to a point and then your body releases the weight. You cannot hold the weight beyond your physical strength indefinitely. It is the same with pain. They think they can determine how much pain is acceptable for a sufferer to endure.

Sir Wessley President of the Royal College of Psychiatrists and President-elect of The Royal Society of Medicine, according to Kings College is going to shape the future of mental health, this is very worrying (London, 2017). In the Joint Commissioning Panel for Mental Health, it once again made sure ME/CFS stays were no biomedical treatment will be given, and obviously does not accept the World Health Organisation that ME/CFS is an organic disorder and insists it is a functional somatic syndrome. This denial of biomedical treatment, is in violation of an individual’s ethical right to treatment.

Their actions to put ME/CFS as a functional somatic syndrome has endangered yet again anyone deemed “too involved” with their child’s illness. This includes any carer with an ME sufferer and at a time when NICE are changing their guidelines. This will be putting parents like me back under scrutiny of Fabricating and Inducing Illness beliefs (FII), the old term of Munchausen by Proxy.

Sir Professor Simon Wessley himself has used FII against children without a full physical examination or understanding the mechanics of the body. Has denied this involvement on various media outlets. Yet there was a court case and a commissioning group, and the reading of his behaviour through this case, leaves a lot of questions that need to be addressed as to why he still holds a high place within the medical fraternity. (Court, 1992). What happened to Chairman Miss Patricia MacManus report?

I therefore wonder to who’s best interests ME/CFS is put under functional somatic syndrome.

My son had been struggling after a tummy upset with headaches of new onset, repeated infections, low temperatures and high temperatures. I thought he had sinus problems. After having one of his spike headaches in the GP consulting room, the GP sent him as an emergency to hospital.

Migraines with aura are known and black spots are a common feature, when I asked about the possibility of migraine I was dismissed. These types of migraines are associated with neurological problems. This was not investigated, and no medication has been tried in the four years of my son’s illness.

That afternoon and through the night the medical staff were waiting on the consultant to authorise a MRI scan. The next morning the consultant heard the history and diagnosed with Post Viral Somatisation Disorder with multiple symptomatology, on his medical records but not the letter I was sent.

The consultant seemed to think I was asking for the MRI and made me feel this was an irresponsible action for someone like my son, who just needed to get over a virus.

I want to make this point very clear - I did not ask for a scan, my son was sent to hospital by a GP. This shows the attitude of the medical professionals - be mindful of over indulgent parents, give no tests, because this feeds into the parent’s beliefs of illness, as advocated by Sir Simon Wessley.

My son was sent to multidisciplinary team and put on Graded Exercise Therapy (CBT) & Cognitive Behaviour Therapy (CBT), without further investigations. At what cost to NHS and to my son?

The PACE trial and all the other such trials based on this, was not explained to me and I was not informed of the harms that can be done. (Caroline wiltshire, Tom Kindlon, Robert Courtney, David Tuller, Bruce Levin, Allem Matthees, Keith Geraghty, 2018)

“Patients have shown various physical abnormalities when tested 24 hours after exertion”

The PACE authors resistance to openly share the data has been appalling, harmful and discriminatory, especially when you consider tax payers money has gone into this trial along with the DWP, this then draws into question the ethics of not allowing patients voices to be heard.

My son’s team consisted of Paediatric consultant, Psychologist, and physiotherapist who dealt with hypermobile joints.

Following the CBT and GET regime my son was declining very slowly at first. I was questioned and interrogated by the multi-disciplinary team over my closeness to my son, my views on his illness, and that I need to encourage him to school. By a few months his decline was so evident 2-3 days after him doing any form of activity, but this was impossible to convey to the team. Post Exertional Neuroimmune Exhaustion (PEME) should have been taken seriously to stop further damage to his health. On some days my son would open the fridge and ask me “what is my name mummy”. He was blacking out, loosing balance and was in so much pain.

My son enjoyed going for a Pizza at a local restaurant, but this was getting too much for him. At his worst he thought his head was going to explode and would repeatedly ask me if he was going to die. How can you explain the impact of daily life to a team, when their treatment is CBT, where you must ignore all symptoms as heavily promoted by the PACE trial Authors?

If they had listened perhaps his diagnosis of celiac would not have taken over two years, and the damage done to his intestines would have been avoided. That damage reduces the body’s ability to absorb nutrients and vitamins. This was at such a young age and at a time he needed all the vitamins and minerals from his food, and all the support to enable him to recover. Furthermore, knowing that he was iron deficient in his first blood test should have sounded warning bells, especially when we were telling the team - his favourite meal was pizza.

We tried to explain he was very poorly after going to the pizza restaurant, he was not reluctant to go as they kept suggesting. They tried to convince us it was his way of controlling us. This has left him with a higher risk to lymphoma. The emotional impact of their insistence of their view of our son, has had long term consequences to his emotional wellbeing. The impact on us as parents, on his sister and brother on our collective emotional wellbeing has been immense.

When I asked for help with his increasing pain levels, I was assured that just by acknowledging his pain - by patting him on his legs, would suffice. I should modify my language around him, not acknowledge his symptoms, and to concentrate on his positives, using encouraging words instead of my anxiety. The fact it was his words and understanding I was using, was lost in their belief and understanding of a denied illness, perpetuated by Wessley and his colleagues.

I questioned the treatment and asked if anything else could help. I took in some information that I wanted to discuss. I pointed to the part in the Myalgic Encephalomyelitis Adult and Paediatric International Consensus Primer for Medical Practitioners, (International Consenseus Panel, 2012) about Post-Exertional Neuroimmune Exhaustion (PENE) and explained about his symptoms being delayed. I did not realise this was not allowed, or that it would put me under further suspicion.

The next time I went to the hospital my son went into another room with the physio, who till that point, I trusted. Previously she had explained to me about adrenalin rush, and the need to take every daily task as an activity, resting in between. At this point my son had to rest from putting on his socks, then putting on his shirt etc. He would become dizzy breakout in cold sweats, feel sick and he would explain that his world had gone black. So, her advice to me had made sense, I thought we were in safe hands and was grateful for her support.

I had taken my Sister-in-Law with me to that appointment, as I felt threatened, and she had witnessed my son’s decline. I also thought I had miss understood the psychologists attitude towards me. We both came out of the consultation even more confused, and alarmed.

The physio had encouraged my son to stand from a sitting position 20 times, and to catch a heavy ball. I had not been informed this was going to happen. He has never recovered from that day. He became bedbound.

My son had never been tested with Post Orthostatic Tachycardia Syndrome (POTS) even though this is well known to be associated with ME/CFS and hypermobile joints, in fact in 1986 Ramsey would diagnose ME on all my son’s symptoms. (Mavin, 1988) . Ramsay mentions that this disease can alarming become Chronic, so not to take great care around ME is to do great harm.

The diagnosis of POTS for my son took over three years. The damaged caused by this lack of diagnosis not known, but the build-up of lactic acid has been known for a decade or more with ME and well documented around the world. This should have been explained to me, as this increases with any activity and affects the gut and brain. Who stopped the 2010 revision of POTS on the NICE guidelines with regards to CFS/ME?

At this point they wanted to change the diagnosis, as children recover from CFS in 6 months to a year. All the allowed research by NICE would seem to suggest this, with media coverage of research by Professor Crawley emphasising this you can hardly blame the medical profession for believing this is true. But her research is based again on the same flawed methodology as the PACE trial. The conflation of Somatic, CFS on ME is the biggest problem here, not understanding the difference is very harmful.

They wanted to take my son into hospital for further assessment and rehabilitation, with little contact from me, so that they could re-educate him? Autism and other somatic disorders to do with pain were mentioned. As there was nothing wrong with his body, in fact they explained to me he enjoyed the exercises. The NICE guidelines stipulate that Heart monitors should be warn when exercising, and about Post Exercise Malaise, so why did they not understand my son’s exercise intolerance? (NICE, 2007) After all everyone agrees, any form of activity even thinking causes a rise in symptoms.

At this time, he had no further tests, even though I had tried to get them to look at the Paediatric Canadian Consensus Criteria, had marked all the relevant bits that clearly showed he was suffering from all the symptoms needed for ME, and had left the booklet with them. Or was it because I had done this, that they now questioned me?

They were aware at that time he had inserts in his shoes, due to musculoskeletal problems and he bruised easily. So why had they not tested him for a potentially life-threatening condition such as Vascular type Ehler-Danlos syndrome.

Why were the purple stretch marks on my son’s thighs and knees not looked at as potential signs of problems with his adrenal glands? As these markings are a sign of the adrenaline rush, the physio had told me about previously.

Why was not a Lymes test ordered, or thought of, yet again all the symptoms point that way?

Why was not sepsis thought of, with his continuing low temperatures. Since 2007 low sepsis has been talked about, and new research is looking into this also (Johnson, 2018)Cort Johnson overview of this is a good rounded piece.

All through this process I would explain, it was not that my son did not want to go to school, be with friends, ride his bike be free. It was the fact his body could not cope. My concerns about his health were ridiculed and belittled. Yet I am the one proved right with further diagnosis.

Many parents learn to protect their children from this passive aggressive behaviour of CBT and GET, as prescribed by the PACE trial. I would go so far as to say, it is the same as being asked to torture your child, many parents are left feeling this way.

Yet we are given no choice by the professionals due to the teaching of the group that is led by Sir Wessley, professor White, Sharp and Chalder. More importantly Sir Professor Wessley who determines allergies are modern day replacements of the devil, or a way of people being able to blame something on ill health, instead of taking responsibility, is allowed to cloud medical teaching and government policy, why?

The PACE trial has allowed other trials such as SMILE, FITNET, and MAGENTA to go ahead. These trials on young and vulnerable children are akin to grooming the child and blaming the parents. The evidence of this is the number of parents falsely accused FII. If they are taken to court, even if they are proved innocent, they are affectively gaged from stating the truth and are not allowed ever to work with children. It breaks families up and causes untold stress. This protects bad science and perpetuates the myths about CBT and GET. Making bad policies and guidelines. These treatments do not work in education, so how could anyone assume they would work with a multi system disease such as ME?

At no point have I been supported or given empathy. My life has been taken from me, I have seen as Mrs Proctor had all those years ago my child decline in health, unlike Ean my son has not made a recovery as yet. I have been accused by all sorts of outrageous and offensive behaviours, and no one bats an eyelid at their consequences to me as an individual. I have not formally been accused of FII, that does not mean it is not on my, and my son’s medical records.

It was when I heard Henry Wolsey words that I began to understand my sons condition “I have too shot my bolt” He said when he could no longer put one ski in front of another. Henry died on 25^th June 2016 of complete organ failure due to a stomach infection that they could not treat. On the 23^rd June 2016 Maureen Hansen finds a possible biomarker for ME, with infections in the gut (Hanson, 2016)

Many sufferers with ME die of acute organ failure and looking at my son’s physical condition I would say that it is credible and provable. Furthermore, you do not have to look too far to see the evidence from here in the UK, Australia and the US all around the year 2005, and yet autopsies to find ME are stopped why?

Parents are left afraid to complain, are silenced by courts. I could not go to PALS to log a complaint to stop this from happening to others, I was advised not to. Looking to seeing what happens to Whistleblowers, and my previous experiences, and those of other mothers that have tried to complain, they were right to advise me not to.

Parents cope with all the illnesses within ME, and they learn to fight for their rights. They do not go to doctors for help, there is no help or understanding, it has been eroded by the PACE trial.

To question yourself over your beliefs and the way you parent is not an easy thing to do. To fight against all your instincts to keep your child safe, without any scientific justification is wrong, and harmful to your wellbeing. You are left in utter conflict, turmoil and self-doubt. At this pivotal point you can do many things, for me I calmed the rising panic about the multidisciplinary teams accusations, and viewed the facts.

1. Would my son be better off without me? Yes; if they accused me of FII and took my son away to rehabilitate him.

2. Do I believe ME is a physical illness? Yes; there is simply too much evidence including autopsy’s reports to be in any doubt, too much research all pointing to Ramsey diagnosis of ME.

3. I know that Thyroid, Celiac, Urinary infection and lack of vitamin B12 can all have a profound effect on emotional wellbeing, so Wessley and the PACE trial authors theories about illness beliefs, just don’t add up.

4. Am I strong enough carry on defending my son? I have no choice.

Medical professionals have taken an oath to do no harm. They could not possibly do this to children if they thought it was wrong.

If there was proof that this was a physical disease, they would not use such passive aggressive methods to control you, and groom your child into thinking that it was your fault that they stayed ill, would they? Should they use these methods at all to anyone, let alone very young and vulnerable children?

Governments are there to serve and protect the people, they have set up things like the GMC and NICE, they would not let this happen.

These false understandings are what we fight daily. This could never happen in the UK 2018? We had the mad cow disease, AIDS and the blood contamination scandal, Ean Proctor, not to mention Shipman, we have learnt our lessons?

In 2004 there was an interesting study by Peter White al et who has close working ties to Sir Wessley, Department Work and Pensions and insurance industries, it showed that TGF-a and TGF-b were elevated after exercise (Peter White, 2004)

"Finally, we found that exercise induced a sustained elevation in the concentration of TNF-α, which was still present three days later, and this only occurred in CFS patients."

"The causal mechanisms involved and the direction of the relationship between these mechanisms remain to be elucidated. Altered cytokine balance, for example, following an infection, may modify the threshold at which cytokine release occurs with exercise or activity, setting up a vicious circle. These processes could contribute to the post exertional malaise, myalgia and the central fatigue that characterize CFS (1, 2, 4)."

TFG-a has been closely linked to kidney failure for years now, and I am sure in 2005 Sophia (Wilson) death could have given vital information to biomedical research. For some reason it is never mentioned. I do wonder what the other information we would be gleaned, if other autopsies had been pieced together over time with the knowledge we are finding now from new research.

TFG-b in things like cleft pallet and abnormal lung development are being researched to why was this paper not shared or highlighted. Why was this paper put in the bottom draw?

My son was later diagnosed with hypermobile joints (they don’t diagnose EDS because that sticks a label on him?) Coeliac, and PoTS. All of these conditions are constantly questioned by this group of practitioners involved with PACE trial. As time goes on his joints are becoming more supple and pliable, no one takes notice or evaluates this condition.

It is clear Sir Wessley cannot diagnose any condition consistently; you only need to look at his Camelford water poisoning paper and Gulf War syndrome theories, along with the case of Ean Proctor to see that. (Williams, 2013)

“in the words of Professor Martin Bland, one of the UK’s leading medical statisticians, it is important that false information should not remain on the record to be quoted uncritically by others: “Potentially incorrect conclusions, based on faulty analysis, should not be allowed to remain in the literature to be cited uncritically by others” (Fatigue and psychological distress. BMJ: 19^th February 2000:320:515-516). Wessely’s “incorrect conclusions”, however, remain in the literature to be cited uncritically by others and therefore may result in iatrogenic harm.”

Yet his is the leading voice in ME/CFS behind the scenes and him and his wife influence the BBC and he has now been asked to do a review into Mental Health, against great and esteemed opposition. How does that happen?

I am also aware of what could happen to my son if he has the more serious form of EDS. An acquaintances daughter bled to death due to this condition, yet still the same people that believe ME is an illness belief, think that EDS, POTS is MUPPETS - Medically Unexplained Physical Psychological (ET) Symptoms.

I have had to fight hard and tactically to get those three diagnoses, that to me are the important ones. I have lost all trust in doctors and the system. I dare say there are more medical problems to investigate, but I have learnt from bitter experience to stay away from doctors and hospitals.

I am in regular contact with mothers who, like me have no place to go, with children poorly diagnosed, given the wrong treatment and forced into harming their children by paediatrics, hospitals, education, Social Services, friends and family. We live in constant fear for our children.

It is the physical and emotional harm on my son though that astounds me.

What evidence do I have of the harms, none because children with ME are never taken seriously? I do wonder, however if the appropriate scan was performed what repeated damage they would find. What damage has been done to his organs? How much damage has been done due to the release of TGF-a and TFG-b on his body. What infections he has within his gut. Is his mitochondria working does he have Mass Cell activation? What has happened to hypothalamus and his hormones, thyroid? The list is endless, because ME is endless. I have learnt to do the best I can to cause no more harm and support my son.

I can however tell you of the harms done to his wellbeing and emotional state, and the impact on his life. It has been catastrophic, eroded by such things said to him like “You don’t need that wheel chair you are a big strong boy” when his legs would collapse underneath him, “you do realise your mum had to give up her job because of you?” all at a time when his normal life was slipping away from him, with no explanation, understanding or empathy.

The GMC, the government and the medical profession, but

mostly the PACE trial, have ripped my son’s belief in his *self* apart. He is just one of the growing numbers last counted over decade ago, at 25,000 children in the UK. Over 200 parents falsely accused of FII; numbers not known or counted, and many more that have narrowly escaped due to asking themselves those questions at the pivotal moment as I had, calling on those brave doctors who are aware of the consequences to them, protect our children as the state and all the medical profession should do.

He will never be that boy who used to let the dogs out of my backpack and hold them on his lap as we bike to school laughing. I will never again see that boy that never walked when he could run, never run if he could climb, the one I was confident that one day would fly to heights that he dreamed to live up to. That time in his life has gone

How can a child be robust enough to cope with the treatment as prescribed by Wessley, Sharp, White and Chalder?

PACE with its form of CBT and GET, as Trudy Chalder teaches shows how far they allowed to go with regards to the wellbeing of children in their care. (williams, 1996)

In a letter dated 22^nd November 2003, the mother of a young man severely affected by ME wrote:

“The consultant in charge wrote to Dr Wessely for advice. On my son’s hospital file is a document dated 07.03.01, a “Draft Action Plan Proposal following consultation with Trudie Chalder”. I find the action plan shocking, and I was particularly disturbed by the penultimate paragraph, which states:

“We expect (her son’s name) to protest, as well as the activity causing him a lot of pain. This may result in screams….it may feel punitive”.

When I hear the recording of Sophia being forcefully taken away from her home, and read her letters, as a mother I ask the question how has society let this happen?

Sophia’s case: what was found as one of the causes of death was acute anuric renal failure, ie. a very sudden onset of lack of output of urine arising as a result of ME/CFS.

This is years after Ean had been brought to the attention of the Queen, who had passed on the information to the Secretary of state for health. So, it has been known how children were being treated from as far back to 1986. (Proctor, 1989) Ean asked his parents "do I have to die to prove how ill I feel?" This has not changed in 30 years

But we have all let this happen. This situation has have taken my son’s dreams and crushed his body.

He will say often to me “Don’t ask me how I feel mum, I have to deal with it. I don’t want to look back it hurts too much; I don’t want to look at the future, because I know people don’t believe me. I want to live for now, so I can be happy now.

That is what they have left my boy with, and my family now must live with the consequences of that.

Yours Sincerely

Tina Rodwell

Open Letter to Richard Horton of the Lancet gathers more names

2018-07-10T03:18:00.000-07:00

I cheered every name on this open letter and was wondering how much longer do we have to wait before the right thing to do, is done?

I also wished I had enough funds to take them all to court. The lives ruined because of this shameful research would be striking.

If you laid all the people and the children with ME hand in hand; lying down obviously, they would stretch around the world. The whole world is affected and touched by this illness, and none of those that suffer get the help they need or deserve. This huge falsification of facts that has led to a myth, that has harmed all those people around the world, needs to be taken down.

When you go to court you have to have an idea of the compensation you would ask for if you win the case and this also got me thinking.

Motivational speakers insistently talk about the little things and taking control. Well let me tell you that the little things that count in life are not valued. I would be laughed out of court if I asked for compensation over picnics with my family and our dogs. But it is those picnics in these last few years that I have missed the most. Picnics at the seaside; playing games on the sand, at woodland areas with bikes, in the back garden with family and friends, we have missed them all. The only place my son can have a picnic is in our home.

What the motivational speakers don’t tell you is, that sometimes when you do the smallest of things it can feel like a smack in the face with wet cold and smelly fish.

At 8 my son found it funny - having a picnic in the house on rainy days. He became so unwell he could no longer laugh at my funny ideas. At 13, my son would feel as this small attempt at gaining something he has lost, as a smack in the face with that large smelly fish.
In my mind I hear the words of William Shakespeare spoken by Emma Thompson, in the way she played the scene from “Love Actually”.
LV sonnet

“like as the waves make towards the pebbled shore,

So do our minutes hasten to their end;
Each changing place with that which goes before,

In sequent toil all forwards do contend.”

I think of all those people, researchers, doctors and sufferers that we have changed places with, as well as the time that comes crashing in on us, washing us out to sea. What compensation would ever replace that time lost? Of those memories we should be able to cling onto in times of hardship or when our time has come?

I think of all those yet to come that need not suffer as we have had to. I think of all the money lost on follies of empire, that has been built on the good name of our NHS, and it makes me SadMad.

The control of this is yours Richard Horton, now cometh the hour, cometh the man. For it is time to stand firm with the need to do the right thing, not just for our people or our country, but all those around the world.

Most of all Richard Horton stand forward for science and its good name.

You can see the Open Letter that David Tuller is committed to here

http://www.virology.ws/2018/07/10/trial-by-error-yet-another-appeal-to-the-lancet-with-more-on-board/

Third video of PAINSS explains how Activity impacts on Severity and incr...

2018-06-28T00:16:00.001-07:00

What would you do if your child had a chronic illness

2018-06-28T00:15:00.001-07:00

My Special Educational Needs and Disabilities - written submission

2018-06-01T03:07:00.000-07:00

I very much appreciate that you have invited the parents to write in with their lived experience. I hope in the near future you will have an open and full dialog with parents and their children. Children can and do speak eloquently of their reality and professionals grasping their understanding is of paramount importance. They should be closely listened to.

I would first like to explain how we as parents are treated. We are viewed with suspicion, and we are mercilessly gaslighted. Fabrication and Inducing Illness is being brought in across the country in education, we seem to have forgotten the cot deaths in the 1990’s, this accusing all by untrained professionals will have a massive impact on society and family life in the UK.

Mental Health is in disarray, with a lack of understanding of cause and effect. Misdiagnosis of many physical conditions and or lack of vitamins and minerals for a lot of different reasons; such as celiac disease can have a profound effect on a growing brain and body, but on average takes 13 years to get a diagnosis. We need physical cause ruled out before mental health is thought of because of the problems it causes children when misdiagnosed.

If you look at the way dyslexic children have been treated along with those who have autism, and still are. Autistic children are seen as behavioural problems/Mental Health problems and not as a different viewpoint from the norm. They are given medication that is not needed and very little support within school or society. Now they are taking that understanding of diagnosis away, so therefore they will be seen as? Disruptive normal children?

With a diagnosis come support and understanding and great things can be achieved. It is the mindset of education and Government officials that needs addressing with regards to “labels”. Giving people a “label” is understanding their needs. Have we not learnt from Christy Brown (My Left Foot Fame), are we now just turning back time on disability?

Being profoundly dyslexic on bad days and just about able to read and write on good days, I was applauded at the lack of understanding of the needs and cognitive processes a person like me must go through to read the simple Lady Bird passages. All three of my children are dyslexic and nothing in reality has changed in nearly 40 years since I was at school. Fighting an educational system that would rather gaslight then support. Trust is gone, what authority says, preaches and does are very different things. They delegate responsibility onto others, giving no power to enable change in outcome. In other words, they talk a good walk, but cripple those that have to walk their talk.

My two eldest have been supported by me to get them to University, yet the school take the credit. No notes are taken of the extra measures I put in place, so no understanding is achieved. Both my children have had lack of understanding of the emotional trauma a school brings down on them when they were unable to keep up with their counterparts. The teachers often were frustrated with their progress but did not have the capacity to listen and act upon the information they were given; not just by me.

Ofsted do not look for the support and understanding of the curriculum with regards to children with Chronic conditions. When in chronic and unrelenting pain there is no capacity to learn, no headspace for anything other than how to breath and meditate your way through.

Physical health is not looked at as a possibility when I first came across SEND

My youngest son became very sick at the age of 8. I received no support, empathy or allowance for the fact he had multiple infections, and multiple conditions. The Educational authorities are aware of the pressure doctors are under, and yet I found both medical and educational professions fighting to delegate responsibility. Furthermore, they expected me to understand their jargon, the way they worked and what they needed from me.

All organisations are only too willing to bring my ability and hold me accountable for their failings.

I had to find out all the information myself and am used as a go between; an unpaid employee that they seemed to think they needed to give very little regard to. To find the information took me about a week of tracking down who is responsible, then I found I had to adapt all forms to fit a physical disability and not anxiety as a school refuser. I have two arch lever files of letters written to gain support from medical and educational staff. All at a time of unbelievable stress trying to juggle all the needs of others rather than concentrating on my family and my very sick child.

There needs to be a full review with an honest reflection of diversity of disability (including invisible disabilities caused by long term chronic conditions) and educational needs. Painting a true picture of the child as an individual. At the moment; it is more of one size fits all with a defernite leaning towards school nonattendance that is put down to refusal as the fault of parenting.

Forward for ME parliamentary Group, Chaired by Countess of Mar have minutes of meetings dating back from 2009 with regards to education for children such as my son with the invisible and Chronic illness Myalgic Encephalomyelitis (ME). Along with Jane Colby of the Tymes Trust (a former Head Mistress) they have tirelessly strived to achieve the proper and appropriate education for children with ME. The Tymes Trust has excellent information, experience and support, both need to be listened to. Yet, in my experience you can give the information, but if the Educational establishments do not want to listen it puts parents and ultimately their children in a very difficult position.

However, I have been lucky with the support of Tymes Trust, once a home tutor was put in place I found their ability and experience to work in harmony with my child has been exceptional and should be celebrated, understood and promoted as part of the gold standard of any educational system.

We should be proud of those that achieve against all obstacles, and not those that achieve through good luck, good health and fortune.

#ME Has a Long Recovery From Having Fun

2018-05-12T00:10:00.005-07:00

My son turned 13 last month and like all 13-year-old he was excited. We were going away for the weekend to celebrate and he was looking forward to quadbiking and trying his hand at cross bow.

Unlike most 13-year old he had been in training for the excitement, travelling and hoping he was well enough to achieve his goal of riding free on a quadbike.

With that careful training like an Olympic athlete he was in good shape, feeling good and up for the challenge. The quadbiking lasted around 45 mins and he was amazing.

Unlike normal 13-year old when he got off the quad bike he could not speak or move his legs and was in immense pain all over his body, my son has Myalgic Encephalomyelitis (ME). His recovery will be long and painful

ME is an invisible illness that effects every part of his bodies systems, leaving his body exhausted and in a state of shock every time he tries to live the life he had. ME has been abused and the only real research in the UK backed by Department of Work and Pensions, has been shown to be fraudulent. Many universities around the world use it as an example of how not to conduct a trial. Yet the NHS England still defend it and the Lancet refuse to take it down. It would appear like Windrush peoples position is more important than integrity and truth in the UK.

Unfortunately, my son could not attempt the crossbow as his body had flared so bad, we knew he had to spend the rest of the weekend recovering.

His dad went home on the Sunday took his sister back to university. Angus needs quiet and calm in order to recover. He hates quiet and calm, it is not in his nature to be still, this does not help with his recovery. Even though his body flaring is a common occurrence it is still a shock for him to go through and for me to deal with.

We have no medical help and even though there are many things that can help to alleviate the flare Doctors are unaware due to the misinformation and the voodoo research that has been allowed to continue. True biomedical research that has never received any government support or funding.

How long will it take him to recover from this much enjoyed weekend? Who knows, the scary thing is he may never recover. Why does the ME body go through this Post Activity Increase of New Severity or Symptoms (PAINSS) is the key to finding what ME is but as yet the Government have hindered all those who have tried to find out.

https://youtu.be/RP7xY_jlVTE

BBC Should Check Their Information

2018-05-08T08:08:00.000-07:00

I have just had a reply from the BBC over my complaint with regards to their recent handling of the information of ME. This is placed at the bottom of my letter.

As always, they have not addressed my concerns and apparently the latest clinic evidence shows that mental and physical health is closely entwined. Not sure what they mean by that and they do not give the evidence ?

There should be a full enquiry into the professionals that gave the comments about treatment as they clearly do not understand their responsibilities of do no harm, neither do they understand this disease.

I informed the BBC of their duty to report responsibly and with robust questioning. That CBT and GET are dangerous for those with ME, as explained by the workwell foundation.

How many young people in the UK suffer like Merryn. The Numbers are not counted of those that are ill or if they recover on treatment even thought there has always been great controversy?

Palliative care doctor stated at Merryn's inquest "She was never really pain-free. She had incredible nausea which would not settle and had sensory sensitivities which made my job more difficult than normal."

Merryn could not have anyone hold her or touch her in any way without bringing on more pain. You can read her story here featured in the Mirror:

https://www.mirror.co.uk/news/uk-news/young-woman-bed-bound-three-12559425?utm_source=google_news&utm_medium=referral&utm_campaign=google_news&utm_content=sitemap

Dear Sir/Madam

I am wring with regards to your article http://www.bbc.co.uk/news/newsbeat-44004882 has very serious misleading information about trials into ME, the fact you quote unnamed “Specialists” and unnamed trials is bad practice. How can anyone verify their evidence or their qualifications? You are then misleading the public.

The Workwell Foundation have just issued a letter explaining how dangerous CBT and GET are for those with ME. The science around the world is proving everything that patients have been saying for decades about activity beyond the body of those that suffer ME is correct.

http://www.workwellfoundation.org/wp-content/uploads/2018/05/MECFS-GET-Letter-to-Health-Care-Providers-v4-30-2.pdf

The research from the UK that involves CBT and GET is flawed, on many many levels. Most importantly you cannot enter a trial as suffering from a condition, for the researchers to change the criteria that puts participants of the trial as recovered before they receive treatment and say the treatment cured them. Your journalists stating treatments work should have looked into the claims of those specialists and the trials they have taken their information from.

All through this piece you have shown how harmful activity is to the ME sufferer, so you must start to question the haphazard, flawed and harmful trials and information you receive, you must verify their authenticity and allow others to do the same.

All other studies based on this flawed, non-measurable outcomes and passive aggressive treatment, should be held accountable for their research. You should at least question them to prove their worth. Some of the participants are very young children, at the very least you should ask basic questions.

The biggest trial that was funded by GMC and DWP called PACE, has been found flawed and possibly fraudulent. A debate earlier in the year where Ms Monaghan explained “it will be considered one of the biggest medical scandals of the 21st century.” https://goo.gl/t6ihTh You did not report this, so therefore you are misleading the public into thinking these trials are honest and safe.

https://hansard.parliament.uk/Commons/2018-02-20/debates/990746C7-9010-4566-940D-249F5026FF73/PACETrialPeopleWithME

You say the NHS has funded research, which research exactly are they talking about and you quoting?

NICE old guidelines; which are in the process of being changed; stated that heart rate monitors should be worn when attempting any form of exercise. To my knowledge none of the so-called “leaders in this field, in the UK” use them. They research on very young children without explaining the most important difference of ME to other conditions, that of Post Activity Increases Symptoms or Severity (PAINSS) the researchers call this Post Exertional Malaise (PEM). Over the last 20 years it has been known that, Orthostatic Intolerance (OI) or Post Orthostatic Tachycardia Syndrome (POTS) plays a major role in the function of those with ME, yet you never see this in clinics or in trial information that uses CBT and GET. This alone is against the informed consent whereby a clinician must be aware of all the research and possible harms. It is your job and responsibility to ask why this does not happen when someone of the public comes down with ME or is asked to partake in research. Some of these children will have other conditions like Lymes, are you seriously suggesting that Lymes can be cured by exercise.

As a mother I have had to find out most of the basic information of this hidden and discriminated illness myself. I had to watch my son be pushed to the point where his body Just broke. I had no choice, I was misinformed that he would get better after 6 months. Not to mention the science behind the trials is more than a little misleading to me, and the general public. If you were going to quote, you should have given full facts, with named persons, so that verification of facts can be obtained. Not to do this means parents like me are misinformed and like my son at the age of 8 will have their lives ripped away from them.

Merryn Croft was not able to have a cuddle from those she loved as she lay dying, I have no way of knowing if this is likely to happen to my son because of lack of understanding by professionals and lack of biological research in the UK.

Reading the information about the trials and the research now emerging, I know I am being given false information and that must stop.

Please pass on to me, the information given to your researcher about the trials the Specialists were talking about, and the trials the NHS say they are funding.

Look forward to hearing from in the very near future

Many Thanks

Tina Rodwell

Dear Mrs Rodwell

Reference CAS-4915499-TDRGZP

Thank you for getting in touch with your concerns about the Newsbeat article.
We have forwarded your concerns to the programme team who explained that the statement they used in the article was actually an abbreviated version (please see below for the full statement, and the list of academics that it is attributed to).

"CFS/ME is a serious and disabling illness and the fundamental goal of all researchers and clinicians in the field is to help patients. Everyone wants to see more research, more funding, better diagnostics, and more treatment options to improve the lives of patients suffering from this condition.There are however, some misconceptions about the evidence for cognitive behavioural therapy (CBT) and graded exercise therapy (GET) as treatments for CFS/ME. These therapies help many people with CFS/ME by reducing symptoms, increasing what they can do, and improving their quality of life.
NICE recommends that both CBT and GET are offered to CFS/ME patients, and this advice is based on good evidence from multiple studies and randomised controlled trials (RCTs) showing that these treatments are safe and useful for some patients. These recommendations have been in place for many years, and the evidence-base for these treatments has grown with time. CBT and GET can help patients with conditions such as cancer, chronic pain, and multiple sclerosis, so their use in CFS/ME does not infer that a condition is a mental illness.

Scientists and clinicians are also increasingly frustrated with the distinction made between ‘mental illnesses’ and ‘physical illnesses’ when the latest clinical evidence shows that the two are closely entwined. We all hope for new advances in the understanding and treatment of this condition but right now there are no alternatives for patients, so it is vital that they are not deterred from accessing therapies that can help them. " Prof Trudie Chalder, Professor of Cognitive Behavioural Psychotherapy, Institute of Psychiatry Psychology & Neuroscience (IoPPN), King's College London Prof Esther Crawley, Professor of Child Health, University of Bristol Prof Paul McCrone Professor of Health Economics, Institute of Psychiatry Psychology & Neuroscience (IoPPN), King's College London Prof Michael Sharpe, Professor of Psychological Medicine, University of Oxford Prof Sir Simon Wessely, Chair of Psychological Medicine, King’s College London."
We hope this explains our approach.

Thanks, again for taking the time to raise this with us.

Kind regards

A Mad Hatters Tea Party In A Wonderland of Despair

2018-03-03T06:54:00.000-08:00

Why Have We Got Chocolate Teapot Science?

And Not The Elegant Bone China Science!

A Mad Hatters Teaparty In A Wonderland of Despair

I guess there are 101 reasons why Myalgic Encephalomyelitis (ME) has more than its fair share of chocolate teapots. What makes health professionals lose their humanity in such a chronic illness? You do have to wonder why and how this ME Wonderland of Despair has been achieved. Come with me down the Rabbit Hole to witness a land we are forced to live in.

When you read the history of ME, you start to see the organised chaos of a Mad Hatter and the March Hare, and how they have been allowed to take control over an exclusive Teaparty. They have achieved this with just linguistic gymnastics and passive aggressive psychobabble semantics. There is no sound proven evidence of behavioural disorder, mass hysteria or mental illness in ME. Their own evidence proving that ME sufferers are not against mental health or suffer from mental health per se. Still they shout out off with their heads, they are vexatious activists not to be listened to, every time the chocolate Teapots start to melt, and people have started to take notice, or a water tight Teapot is brought to the table.

The sleepy dormouse of the establishment tries to lose their responsibility, but is sleeping on their watch a defence? As the dormouse’s slumber they are leaned upon, the closeness of their acquaintance an uncomfortable truth. So, the evidence of the truth is then hidden and never spoken about, anyone who tries has gaslighting shone in their faces. Denying medical evidence is another trick they employ, with the help of those allowed to sit at the table of the Mad Hatters Teaparty. Saying there is no place unless you drink the wine, when you ask what wine, this is then given as a reason to stop you from pulling up a chair.

The evidence of the torturous treatment imposed is denied, even though Ean Proctor, Sophia Mirza, and Naomi Wittingham; to name a just a few, show this to be the case, it is all explained as a necessary evil. For Decades the ME Wonderland has been in a medical Rabbit hole, with the Mad Hatter running the show and a teaparty to rival all lavish and unrealistic occasions. Abandoned by reality, truth, integrity and honesty.

The elegant porcelain teapots holding the boiling water, which made a lovely brew for all to see; like Dr Ramsay’s diagnostic criteria in 1986 and the understanding that ME could become chronic quickly, have been covered up by the ugly mess of the chocolate teapot science. Those Teapots held a brew of cherry blossom tea that is both bitter and twisted, with drink only me on the labelled spout.

All the Bonbon dishes have been kicked about too and we now cannot tell the difference between a humbug and a toffee, with not a Dolly Mixture insight. Humbugs; are masked injuries leading to an emotional response, lack of minerals or other physical stress like virus, mould, chemical etc. to the body. Toffees are those who have lost all outer protection and are in an emotional meltdown. The research into triggers of either, should never be covered in chocolate teapot science, and nothing should be assumed. Never to look for the physical in the psychological, is a big mistake. We should have learnt this lesson, but we seem to be going backwards with the biosocial approach.

We need to understand how and why mental instability occurs and how we can support sufferers. The problem we have, is that everyone gets lumped together. The introduction of Cognitive Behavioural Therapy (CBT) from the PACE trial has damaged our understanding of Mental Health.

Many that suffer Post Traumatic Stress Disorder, find that physical energy enable them to cope, but this is only part of the foundation they need to recover or live with their new reality. Talking therapies given at the wrong time, with this disorder can make the trauma go deeper. We are all individuals and we need to be seen this way.

To not understand the relevance of the toxic mix in the Gulf War heroes is beyond words. To put their physical stress as Mass Hysteria is way beyond Alice in wonderland.

The main researcher in the area Gulf War syndrome also talks on the First World War and never mentions gas poisoning, or the impact the explosions had on the brain. Yet we freely talk about the footballers head injuries and how that effects and damages the brain. Does no one else see the madness of the this wonderland of misinformation were pet theories take over good science.

The Mad Hatters Teaparty has taken over the normal everyday reality of life. The normal blips of emotional instability due to normal stressful events we all go through, hormonal, dietary or illness is being infiltrated and seen as only a mental illness. Understanding the physical, emotional and body stressors can make a huge difference to support given and enabling recovery.

Let’s take having a baby. Having a baby puts an enormous demand on your body, social standing, and alters the meaning of life. If we look at this, we have a balance in our Bonbon dishes, a real mixture of both humbugs, toffees and Dolly Mixtures. Unfortunately, we now hear a lot about wellbeing and mental health with regards to becoming a parent. Not so much about the support once given by family and friends that was both supportive and educational. Neither do we hear about diet and rest.

Now, you must be ready not only to be a parent but also take on the world. This is orchestrated by those that can afford to pay for support. We seem to have lost the understanding of the hormonal changes you go through, the bodies increasing needs, and distinct lack of sleep. CBT or talking therapies will not take the place of family support, hormones, minerals and sleep. In effect the humbugs are not recognised and only the toffees are addressed. All Dolly mixtures trampled on, giving an imbalance of treatment. This then translates to an imbalance in the parent’s self-belief. The result is that Chocolate Teapot science is allowed a free rein to brew more Cherry Blossom Tea.

If you were given a hormonal, thyroid, folic, iodine, iron, calcium and magnesium tests through pregnancy all the way through to when the child has been weaned, one wonders what correlation you would find on the general physical and mental wellbeing of the mother and child. The Bonbon pot would be balanced and full.

Let’s take just one of those little building blocks of health and wellbeing that make the Bonbon pot balanced. A little and unknown about building block called Iodine. This one small part of our diet is hard to incorporate as our food is relatively low in it, and the environment is depleting it. It is essential for a fetus and young child’s brain development. During pregnancy a woman’s iodine needs are increased. If we don't know about it we don't increase it and we can't track it to the cause, so we blame mental health.

Now when I was pregnant with Angus I was constantly sick, and it was agony eating. Forcing your gag reflex to behave is not easy, I was sick 24/7. I was also unable to eat much, what I did quite often came back up. So what effect would that have had on me and Angus. Low Iodine means low thyroid hormone and can lead to low birth weight and premature delivery. He was early but not unduly so. My hair is so fine you can see my scalp. I have lost 5 babies and I also have hypermobile joints. Low thyroid also gives you muscle weakness and affects your emotional stability. No wonder then that I cried when I kept dropping things, it was not my sanity I was losing, it was my iodine, among 101 other things. So why do we not track our levels of these building blocks of body and mind? Chocolate Teapot science?

If that had happened and our understanding of the importance of all those building blocks through illness I wonder if Angus’s ME, Celiac and hypermobile joints could have been tracked and a recovery found. Would Sepsis have been looked at as a possible cause of his condition or the slow sepsis that Dr Bell has thought about, taken more seriously. Would tracking them now show us a difference in his Post Exertion Malaise (PEM) and cognitive dysfunction when he enjoys life a little too much?

Chocolate Teapot science wants to show we have full control of our minds, but that is never going to work if our building blocks are missing. We must get realistic; Chocolate Teapots are never going to hold the hot water needed to brew a robust tea.

Most of us cannot read our blood results, so we rely heavily on the medical staff to do this for us. They intern rely on the education they receive, this intern relies on watertight research, carefully measured with the right blend of tea, that is brewed for the right amount of time. If the Teapots don’t hold water and the brew all wrong, with the Bonbon dishes uneven we are all going to live in a costly mess. This is what has happened to ME. A costly mess, through lives lost and the fabric of society and its thinking ripped to shreds.

This mess has not only cost lives and stability in the medical profession, research and the finances of our country. It has brought in to question the trust we place in science and those that preform it. The debates now going on in parliament with regards to PACE trial and Science trials in academia need to be public and balanced. Thanks, to TV in parliament we can see what is being said, and I am appalled at the haphazard way research can continue in our Universities and hospitals.

This Wonderland is now a world-wide problem, caused by the Mad Hatter and his ability to cover the table with Chocolate Teapots, to kick off the Bonbon dishes, taking out all the Humbugs, telling everyone there’s only toffees and no such things as Dolly Mixtures and to move on, there is nothing to see.

Good doctors have been taken to the GMC if they dare to mention diet supporting the body, as with Vit B12, looking out for Thyroid problems! Dr Myhill has been taken to the GMC 28 times and the GMC has not investigated why this keeps happening? ME could have been understood and treated decades ago if the truth had been told and acted upon. So why was it not? Political or Empire building?

Mothers like me are questioned when we do not want to torture our children with CBT and GET treatments, as happened with Ean, Sophia and Naomi. At anytime I can be accused of Fabricating or Inducing Illness, like those mothers that have gone before me. I have no defence or support and my child can be taken in as little as 30 days. You can see the harm that has been done when you watch the YouTube videos I have listed below. This has been covered up by those friends sitting at the Mad Hatters Teaparty. My Rabbit Hole of reality is truly a Wonderland of Despair.

The Medical Research Centre has never put resources into the management of these vital building blocks to our physical and mental wellbeing with regards to ME. No scans of the brain looked into why? So how can we ever know what affects the sufferer. This is just one small part of the problem at the Teaparty. Sepsis, I say Sepsis. Slow sepsis has been talked about for a long time now, and is never looked at with regards to ME.

Looking to include all known factors, inviting all those with China Teapots and Alice herself, to sit at the table is what is missing. Most important is to listen, as Joseph Montoya explains ME has been whispering and we are not listening.

Alice should be asked to the table and her voice should be heard above all others. The questions she asks can take time, but Michael Sharpe is right Prejudice is a great time saver. You can form opinions without having to get the facts, Chocolate Teapot Science is easier, and he should know. If you have a mad Hatter controlling the Party, you will never have to get balance or truth.

We are only beginning to understand the very basics of our food, gut, brain and wellbeing it’s about time we got some porcelain research and cleared up the chocolate teapots and got everyone sitting at the table with clear direction, to support good science and those patients that suffer.

Will we ever stop going down the medical Rabbit Hole and have a bit of reality.

The result of this endless forcing you down the rabbit hole is "Mother Blame" a way of gaslighting the healthcare needs of 25,000 children away into another decade. As a mother how does that feel? Let me explain

https://youtu.be/DNNeE6rhTm0

The Early History of

http://www.meactionuk.org.uk/Denigrationbydesign.htm

Naomi Wittingham and others voice the abuse that has been hidden from view

Naomi lived in constant fear of what was going to be forced on her next. This sadly still goes on. What will it take to stop this?

https://vimeo.com/ondemand/22513

Dr Myhill

https://www.youtube.com/watch?v=IOXCjZPboFw&t=74s

The Death of Sophia Mirza

https://www.youtube.com/watch?v=yrBAlKtroBw

Euan Proctor

https://www.youtube.com/watch?v=cDeu_OlMivU&t=50s

http://parliamentlive.tv/Event/Index/9c6ed4dd-664d-4a44-aaaa-4839f6e1503c

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3736612/

https://hansard.parliament.uk/commons/2018-02-20/debates/990746C7-9010-4566-940D-249F5026FF73/PACETrialPeopleWithME

http://www.scielo.br/scielo.php?pid=S0103-507X2011000200005&script=sci_arttext&tlng=en

https://www.ncbi.nlm.nih.gov/pubmed/10497885

https://www.ncbi.nlm.nih.gov/pubmed/8107485

http://tidsskriftet.no/en/2017/03/case-reports/woman-her-50s-chronic-fatigue-syndrome-sepsis-and-hyponatraemia

https://www.celiac.com/articles/21645/1/Late-Diagnosis-of-Celiac-Disease-Increases-Risk-of-Sepsis/Page1.html

http://simmaronresearch.com/2018/01/chronic-fatigue-syndrome-mecfs-chronic-form-sepsis/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1856764/

https://www.semanticscholar.org/paper/The-Role-of-Iodine-and-Selenium-in-Autoimmune-Thyr-Duntas/3b27ae172646572e6d31676e3e02072639604c86

https://www.fabresearch.org/viewItem.php?id=7438

NICE Engagement Workshop 2018

2018-02-02T08:42:00.000-08:00

NICE Stakeholder Engagement Workshop

16^th January 2018

NICE said that they wanted people to be themselves, I am no professional. I am a mother of a 12-year-old boy, who has been ill from the age of 8, misdiagnosed, given inappropriate Cognitive Behavioural Treatment and Graded Exercise Therapy, as recommended by the NICE guidelines. He was made bedbound. His diagnosis was reported as Post Viral Somatisation Disorder with multiple symptomatology.

The naming of this illness is of uttermost importance and needs careful consideration so that somatisation is never used to mask illnesses.

My son has ME as defined by DR Ramsay 1986.

I have researched in my own way, and helped to support other mothers who like me have been accused of prolonging their child’s illness. It astounds me after all these decades, few medical professionals or many of the guides into ME/CFS can clearly define Post Exertion Malaise (PEM). My role is to pass on what I know.

My thoughts and musings are in Italics.

I think NICE knew we were coming and did their homework. I walked in and I smiled - ME/CFS was the name they used. Now before you start with the deserved indignation as to why CFS is one of the worst names ever for abusing a group of patients, hear me out, as to why I smiled at the name.

First, it is recognition that ME is the most important part of the name. We have to be mindful of CFS that has been used as the Trogon horse in this illness. If the World Health Organisation classification can be manipulated there is no telling what could happen with a name change?

Second, if we cut off CFS those poor souls who do not meet the full criteria on ME, will languish in the bin of Medically Unexplained Symptoms, on their own for evermore. Who is to say CFS; not treated properly, does not become ME. We don’t know enough, because we have not researched enough, so for me I’m happy with ME/CFS so that no one gets left behind, and until NICE have scoped and sorted the problems and can distinguish between ME and CFS. I am not happy that some medical profession disregard research, put their own take on ME, and does not respect patients. THAT TO ME IS THE ISSUE!

Thirdly they now have to consider how they will tackle the misdiagnosis which is promoted by Kings College London as Unexplained Physical Symptoms/Bodily Dysfunction Disorder or any other name they chose to invent. They have to protect patients from this, imperative for children and their parents. The misuse of Fabricating and Inducing Illness needs to be looked at too, as the previous guidelines have been quoted in many of these cases.

The responsibility of the use of the guidelines is theirs. NICE need also to look closely who they choose to give the facts behind ME and how the naming is going to impact on that misdiagnosis, and therefore the health and wellbeing of all. Be mindful of the children who could lose the rest of their lives to ME.

The decision not to include Thyroid problems and not to look at Vitamin D with the old guidelines was a big mistake as most if not all children with ME have these problems, and doctors reported to GMC if they try to alleviate suffering when using these two deficiencies, again quoting the NICE guidelines. This has to be addressed clearly and succinctly.

Most parents are forced to find out these facts for themselves, so particular studies need to be found to address the in balance here. As regarding the Thyroid there is a known problem of Iodine deficiency found in the Bristol area, using the same Avon Longitudinal Study of Parents and Children (ALSPAC) that Professor Ester Crawley has used. She has determined from that study it is family adversity giving depression in CFS at 16, but to my knowledge she has never looked at Iodine and their emotions could just in fact be an Iodine deficiency.

In 2010 NICE promised to look again at Post Orthostatic Tachycardia (POTS), Dr Rowe explained that this has been known about for the past 20 years at the same conference as Professor Crawley in 2017. To my knowledge Professor Crawley never POTS, but she attended a MUPPETS (Medically Unexplained Physical Psychiatric (ET) Symptoms talk in 2017.

My tail feathers were smoothed over a little when I walked into the conference room. I was pleased as the atmosphere was friendly, open, which gives great credit to the ME community. NICE were mindful of the treatment we have suffered over decades, which gives great credit to NICE.

Thank you to all the NICE team that recognition meant a lot, and is a very big deal. Now we need to put the action where those good intentions are.

Then the separation from my partner in crime, as we were given different tables. Barbra is my rock and my security blanket, my knowledge base of how the NHS and NICE work, fluff a duck I thought - now I’m scuppered.

At the opening, they gently took us over how NICE progresses through the guidelines, the order of things, how they would slot together, addressing the name and the past right from the start.

Does this mean they are determined for change, or just giving lip services? Proof will be in their actions after the Engagement?

They were scrapping the guidelines, ripping them up and starting again! NICE were open to a name change, but we must get it right, we all agreed with that. Though a more considered approach was given in a letter to Invest in ME by Dr Baker, and this will cause confusion, especially to those who tended the engagement meeting.

What they wanted from us was to know the reality of the patient’s and carers’ experience, what is important and where the scoping needed to concentrate. A difficult thing to do, given the time frame.

Once scoping was complete they would then make a committee of 13 people (let’s hope it is not unlucky). The chair would be a lay member, would not have been involved in ME/CFS, and be interviewed for the job, with a clear defined role.

Private practice practitioners, would not be involved in the process, but this could be revised if need be.

They normally have 2-4 patients on the committee.

The development Process looks like this

They have added a new process called Engagement (which I think they should keep, and add a few more of these discussions at every step as they go along, to debate progress and give points raised to the committee, > scope > clinical questions > review protocols > evidence report/clinical evidence (this to me is a very big concern as far as I can tell the NHS has lost the skill set to give meaning to ME or CFS in any reasonable understanding, 101 things to say about this but for brevity I will just say, NICE heard a lot of evidence of harmful treatment, and will leave the rest for now)/economic evidence >recommendation.

My first thoughts were:

1 Who understood PEM, and its impact through CFS to ME?

2. CBT and GET is so misused and that misuse so wide spread, it is too late to rectify the problem. There must now be a strong message sent out to the medical profession that this dismissive behaviour must stop, as it is harming patients.

3. When little research is done on a complex illness, you cannot make good decisions or discussions unless you listen to those that cope, or have lived with the consequences of those treatments that have been implemented.

4. Who can diagnose the full ME condition?

5. Who would know which of the guidelines were good and just needed updating, and the ones that need immediate removal, like the harmful treatments that cause a moderate condition to become chronic – CBT and GET?

6. Know how to treat the condition, and all the coexisting complex illnesses?

On our table we discussed the name for a start. It was mostly decided that it was hard to find a name for a disease that was so mixed, misunderstood, and misdiagnosed without further research. The research fraternity would rather use ME/CFS as it has in the past.

If we changed the name now, how would that effect the new biomedical research coming out?

As for the views of patients around the table it is the attitude attached to the name by the professionals that needs to be addressed. It was also felt if we left CFS out, those that start with less symptoms than on the harsher criteria, would be missed. If they then developed the main PEM symptom in ME, this would be very harmful to them. When does CFS become ME.

Addressing the attitudes and understanding of doctor’s; they; by and large have been misinformation and have not been kept up to date with biomedical ME or CFS research, is the biggest problem. This not only affects ME patients but everyone who shows the signs of tiredness or fatigue; which many chronic conditions do. Not having the right tests at the right time, or dismissing the patient out of hand due to the stigma, is causing many lives; including children with many conditions like ulcerated colitis and peritonitis for example, to have been left untreated, near death and with lifelong avoidable disabilities, as it is with ME.

This attitude/misunderstanding leaves many like me; as I explained, not able to take my child to the GP for any medical problems, for fear of the consequences of this lack of understanding, misdiagnosis. For instance, my son has dry skin forming in his ears when in a PEM state. It is uncomfortable and at a time when his whole body is shutting down. I am unable to get him to a doctor’s surgery due to this impacting deeper on his PEM. But more importantly, what will be said to him and how he will be treated. In the past all sorts of awful things have been said to him, and open threats made to me. This leaves me isolated from all medical care for my son, and coping on my own. This must change.

I explained in New York state 85,000 physicians were emailed a letter regarding Myalgic Encephalomyelitis (ME). This was by the Health Commissioner Dr. Howard Zucher. This needs to be done to put right what has gone wrong in the UK. There needs to be clear consequences if patients are treated this way. Without this, patient safety, and their right to have appropriate diagnosis and treatment will not take place. Due candour needs to given to ME and CFS patients like any other illnesses.

I had four Drs/researchers sitting on my table, and I was very impressed by their understanding of how important an issue this is for all patients, not just for those with ME. Balanced intelligent views of the hardship of doctors and patients was both refreshing and heart-warming, including our scribe who I would like to personally thank for the sensitive way she handled my experiences.

It was felt if you went to your GP and they looked first at you with respect and emergency, at the inability to get better with any infection within 6 weeks, as a potential health threat. They then kept reassessing for the core symptom of PEM; then this would be a better pathway and save a lot of harm, time, and stress. This single act could safeguard children from the lack of understanding. This recognition would save lives or a life of disability.

My main point was that only one Dr I have talked to; up to that point, understood or accepted Post Exertion Malaise/cognitive exhaustion. It is no good putting these in the guidelines and not being able to explain what this means to the patient or to their health, and how important this is as a diagnostic tool.

We discussed things like Post Orthostatic Tachycardia Syndrome (POTS), hypermobile joints, Orthostatic Intolerance (OI) and how this meant many consultants that did not, or were incapable of communicating with one another, on what specific symptoms and difficulties may be impacting on the patient. Inevitably this means exhausting the patients with endless meetings, going over the same ground, with little to no real constructive outcome. Patients need to be seen not just a series of “specialist’s parts”, but need to know the sum outcomes of those parts and about the interaction between the whole body when you have ME.

Many health professionals do not/will not test for any other condition, believing that ME/CFS would bring just negative results. Therefore, so many coexisting conditions get missed. That accepting these other conditions were all part of the ME, is a trial in its self. Many die from cancers because they as a patient are dismissed, that fact alone is horrific and telling.

The other problem is that most clinicians within the ME field; do not understand the importance of Heart Rate monitoring. Over 1,000 patients are doing this for themselves, and finding that their lives can be improved. Once again; a case of not listening to the patient and dismissing them.

The scribe on our table worked as a part time GP, so understood the constraints on both doctor and patients. The discredited Oxford criteria is now out, and the Canadian Guidelines are too strict in the first instance, but a good solid tick box that can be used to track progress from CFS to ME would seem wholly appropriate with both the patients, carers and doctors on our table. Yearly consultations, as standard practice for all, including severe patients, so home visits needed.

The father of 18-year-old girl who has been sick since 2010, bedridden was concerned over the harms done by CBT and GET. We all agreed that the way CBT and GET approach by most NHS staff was totally unacceptable due to the way it was conducted. There are problems with repeat infections, never looked at. This needs to be addressed at as a matter of urgency.

The misdiagnosis of Lymes and the inadequate tests was also discussed. A better test needs to be looked at. The amount of life wasted through this being misdiagnosed is astounding, and as with ME due to poor diagnosis and inadequate tests, it is labelled as Unexplained Medical Symptoms.

This goes to show how misinformed the biosocial take on illness is. I don’t think anyone would argue that the great plague could be contained by changing your bodies systems through determined thoughts and activity? … Although they may try.

It is also worthy to note Upper Respiratory Infection illness, is altered by prolonged exercise. In ME this means prolonged activity of any kind. The advice to endurance athletes is to rest! That these infections are increased in the days following prolonged strenuous endurance events, and it has been generally assumed that this is due to the temporary exercise-induced depression of immune function. So, should we look at ME patients as endurance athletes in a perpetual state of exercise-induced depression of immune function? If we don’t, we are causing known harm! The research into TFG-a and TFG-b after exercise in the ME field and sports research, should be followed closely. The fluctuations in many tests and research are possibly due to the circle of PEM, the individuals on the trial are going through. Once again PEM needs to be fully understood.

It was also discussed that there had been 3 patients on the last guidelines, and that this was problematic for many reasons. The diversity of severity cannot be conveyed with just three patients. We were told that it will be made clear that the patients on the committee will be representing not just themselves, but also all patient groups, and it will be their responsibility to find the facts.

The problem with this is, if they are ill or are time short this will be problematic. You give 10 people the same facts they will interpret with their own bias, and we must be mindful of that. Perhaps the Engagement process should follow all the steps in the NICE guidelines, using the same group of people for continuity, as a discussion and feedback process to give balance to the committee (since writing this I have become aware of a tweet that has been liked by professor Sharp who attended the engagement, which is appalling. “CFS/ME: Swedish couple lost hope, kill their children, commit suicide. Why? In part because of the intense negativity spread by individuals/CFS groups/researchers, saying cause is bodily defect and nothing can be done. False. The children could get well!” Although Twitter is a personal thing, I do think NICE need to consider his actions, and understanding of ME and research in general. Yet again they slander concerns of the ME community, and turn a blind eye to research and cherry pick facts. Karen Hansen and many of our children in the UK pay the price of this attitude.

It was also discussed that the most severe patients get little to no clinical help, contact with doctors and are unlikely to get involved, so this must be considered. None of the severely affected are ever acknowledged, so no real understanding is there.

This is also a worry as most that say they are experts in the ME/CFS field, do not handle severe patients - as home visits are rarely heard of.

Clear defined severity scale needs to be made and understood.

We discussed how the skill set of observing and ability to diagnose is being eroded by the psychological and now the biosocial model.

For me this meeting was a good first step, but I have grave concerns over the history and the abuse.

1. We now have no understanding of ME and lost the ability to diagnose and treat appropriately. Any advice NICE or Patients gain from clinicians are going to be tainted with the biosocial model that IMPARTS are teaching the GPs, that has failed the patients. Who are NICE going to turn to?

2. Very little biomedical research has taken place in UK, so who are they going to ask? The research must be acceptable to the ME community, who for decades have been telling everyone the truth about this illness and have been stigmatised for doing so.

3. Define evidence or supporting evidence needs to be made clear, so that this can be agreed. If patients and carers are not included in this, those that have said they have treated ME and have yet to understand PEM, will be the ones that make the guidelines. This must not happen again, as it is a waste of lives and funds.

4. No or little understanding what PEM is to the individual, or the continual cycle it perpetuates, this needs addressing. All NHS staff and other services should have been able to diagnose/understand PEM, and the consequences to health. This is not the case. We need a clear statement on the guidelines that exist now, to inform all that PEM is a recognised part of ME and part of the diagnosis

5. We need to address the importance of infection, In 2016 Explorer Henry Worsley died after developing a serious infection. He said "Well, today I have to inform you with some sadness that I too have shot my bolt." Henry said his journey had ended because he did not have the ability to "slide one ski in front of the other". Does this not sound like ME? "I will lick my wounds, they will heal over time and I will come to terms with the disappointment," he added. Many ME patients will say this every time they do small and insignificant tasks, and get dismissed at every turn. He died of complete organ failure due to a stomach infection that they could not treat. Does this not sound familiar? How many die from complications such as these? In the month prior to his death Maureen Hansen found stomach infections in ME patients that could diagnose ME in all cases. Autopsies in 2005 found all sorts of problems including organ failure that would have caused great suffering.

6. No one goes out or deals with severe ME, follow their journey, or collate figures. As with my son I never take him to the doctors due to the harm they unknowingly cause, and the scrutiny they place me under. Yet I am the one that has supported my son and his body from being bedbound from CBT and GET treatment, to housebound getting stronger.

There are three considerations that must be measured when forming the new guidelines.

1. Shipman report that states Patients and carers should be listened to. The Government agreed that complaints from patients or their representatives and fellow professionals can provide vital information in identifying potential risks to patients’ safety and that work with stakeholders on a set common standard.

2. Due Candour, no more harm, apologies and guidelines put right. Doctors informed immediately that GBT and GET are potential harms and are taken off as treatments.

3. Most importantly, informed consent. We must be given full facts. Most of the reliable facts are from patients. Due to lack of research over decades in the UK, research from around the world should be included, with a provision for the new biomedical work coming out.

Dr Ramsay and his understanding have stood the test of time and research. I would strongly advise this is the place to start.

These three patient safety steps should have safeguarded my son and my family, but they have been dismissed. The misuse of Fabricating and Inducing Illness beliefs has been allowed to continue unchallenged.

We have forgotten the doctor’s role should be to ‘heal sometimes, relieve often, comfort always!

Yes, I am hopeful, the day was a good solid start to what needs to be done to protect patients, and enable good doctors to do best practice, safely within our healthcare.

We all need to support NICE to make the guidelines. However NICE needs to support the ME community, and stand up for the patients that have been abused over decades. Are we being listened to?

Time will tell, and actions speak louder than words.

To get involved and on the NICE Committee, go to www.nice.org.ukGet-Involved/join-a-committee 21st June 2018.

ME Diagnosed by Post Exertional Malaise (PEM), So Why Treat With Exercise?

2017-11-01T02:57:00.002-07:00

My son was left bedbound by Cognitive Behaviour Therapy (CBT) that told him not to speak about the increasing pain, the blackouts he was experiencing, the stiffness and cold joint pain, the headaches - when he thought his head was exploding. The symptoms are all part of Post Exertional Malaise (PEM). This makes ME unique - every activity, thought, feeling or laughter causes PEM. ME is not a fluctuating illness without a cause. The fluctuation comes from overdoing, which causes increasing severity of symptoms, and further damage to the many systems within the body.

You keep in a rested state you can live relatively free of pain. You increase in the wrong way at the wrong time; you cause damage to your body. This has been proven, and can be tested with a two day physical cardiopulmonary exercise test (CEP). This test has been known about since 2011. If you do a CEP test and then do MRI or SPEC scans, with bloods taken, the damage can be seen! Blood serum and microbiome tell a complete, yet individual story. We will have to look at biomarkers in a different way as every little thing affects ME sufferers, changing the markers.

My son was 8 in 2013, when the psychiatrist and multidisciplinary team he was under insisted on him going to school, and put him on Graded Exercise Therapy (GET). They said he had reached a baseline? He was suffering more pain but they told him not to mention this, so how could they tell he had reached a bassline where his symptoms were under control? This multidisciplinary team did not test for POTS, EDS, coeliac or infection like Lymes. The coexisting conditions well known to those that understand ME.

Since the beginning of time people have understood about Flu and the symptoms? That awful stage of when your eyes are suck with cocktail sticks, your ears are sore and are ringing, joints ache and burn, cold sweats or raging temperature, your tummy is out of kilter and going to the bathroom is like climbing Mount Everest? You cannot face eating and you constantly feel sick. We did not need to know its pathway and we understood it took some time to get over. That was until HIV and AIDS. Now we understand that all sorts of chronic conditions can be caused by assaults upon the body, we are learning how B, T cells work and cytokines. The cause of inflammation and how autoimmune can seriously impact upon a body after infection, we are beginning to understand how Sepsis sets in.

We are beginning to appreciate how all the dots of Cells, cytokines, ATP, inflammation and DNA changes impact, glycolysis and lactic acid cycle, all these problems, centre around the central nervous system, gut and brain and the damages or changes through our DNA.

Yet I am the one who is told I am in “science denial”, an ME activist portrayed by Professor Crawley as some sort of criminal, for wanting to learn all I can about the illness that consumes my son? A person who has a belief that I cannot let go of? Once silenced by threats of Fabricating or Inducing Illness, but NO MORE!

I have been abandoned by the medical profession! They don’t know about all the physical problems and only told to treat with ever increasing activity. I am seen through the preaching of Professor Crawley. SMILE trial based on the Lightning Process, FITNET-NHS with the WII fit, parents re-educated about illness beliefs? Set on by society because my child’s body fails to keep up.

I have found the facts. With those facts I now have my son out of bed but house bound. So when you listen to Professor Crawley won’t let the Children speak of their negative experiences, and carry on with exercise regimes REMEMBER DO NO HARM REMEMBER ME!

I would like to take the time to explain what happens to a child with ME as Professor Crawley who educates other doctors, and does not seem to grasp the concept or take the time to observe. Any activity causes the body to disregulate in may systems deepening on the ME suffer as an individual. This is from watching TV to laughing at a joke. https://youtu.be/DNNeE6rhTm0

Interview with David Tuller PhD, May 2017

https://www.youtube.com/watch?v=xbikuCqoD98&t=160s

Stop The Abuse - Dr. Myhill On PACE Exposed

https://www.youtube.com/watch?v=LasPOnRx1Ek

ME is like a Pair of POLK-DOT-PANTS!!!! Passive Aggressive Non-Trusted Science PANTS

2017-08-18T08:44:00.000-07:00

What do I mean by ME is like a pair of Polka-Dot-PANTS I hear you cry?

And why: Passive Aggressive Non-Trusted Science?

Well as an illness Myalgic Encephalomyelitis (ME) has been hung out to dry and ridiculed due to its many spots and the fact it never does what you would expect an illness to do. The biggest trial on ME in the UK was the PACE trial and it was the biggest load of PANTS, science has ever produced!

So by flying your Pola-Dot-PANT you are giving recognition to many hidden truths about this unseen illness.

We don’t normally wash our dirty PANTS in the open, but we have been forced to do just that, and now we stand proud against the ridicule we have endured for decades.

How as a society, have we been taught to hate those that either don’t die or don’t get fully functional?

It seems we have decided, you can live with adversity but you must be a hero of some kind, you must never be average or different if you are disabled in the UK. If we can’t see your disability you don’t have one! These threads of our society have been carefully woven into our unconscious mind as a “stiff upper lip”. But that “stiff upper lip” has been woven to discriminate and like all discrimination, it is butt ugly.

In 2011 a group of master weavers showed their Emperors of Parliament the cloth they had woven, it was called the PACE trial. It put forward a treatment called Cognitive Behavioural Therapy (CBT) - a mind over body approach, that stiff upper lip at all cost. With Graded Exercise Therapy (GET) which was used to get the patient back to work. They promoted that these patients were just deconditioned and not physically ill. This idea has been scientifically disproven. The very physically ill ME suffers, get no treatment, no support and not empathy. The trial is now considered the worst trial by the world research community.

Yet at every twist and turn, even to those that have been bedbound for decades through this treatment, they quote the PACE trial figures at them, as gold standard research.

This trial was important to the government, DWP, and the insurance industries, all of which the researchers were and still are involved with. It enabled them to link ME to a mental illness. DWP and insurance industries don’t have to pay out if they could force ME patients into the Mental Health box? Whatever the world Health Organisation lists ME as, and which they should abide by, they do their own thing? This has taken a large amount of funding from those that need mental health support.

They played on our lack of understanding over the mind, and told everyone how devilish it could be to your body with no real evidence, just a preconceived idea. Mass hysteria was thrown in as the cause of ME. You only have to look at the Camelford water incident to see how it pans out. Or the contaminated blood scandal; to see the tricks our Government and National Health Service are willing to play with our health. Our journalists, were only too happy to oblige with the ridicule as that sells papers? The comic element brought in by YUPPIE FLU and the changed name from Myalgic Encephalomyelitis to Chronic Fatigue Syndrome, was an easy play on symptoms that could be turned on the patients behaviour. This abuse has carried on through the decades, after all who listens to the mentally ill?

As a country we love anything that we are in charge of, feel empowered by, have an element of self-help and more importantly – can be pinned on the individual’s responsibility, so that society can wash their hands of them? With this in mind, it was easy to fool the medical profession as a whole, if not the entirety. These patients, they assured all, just need to move to get better, even though it was contrary to the evidence. None listened to the patients, through conferences and meetings doctors and healthcare professionals were told these poor souls are just non-compliant to treatment. Being bedbound was just deconditioning; they did not need tests, as you can just tell their “type”?

The confusion over pain even for cancer patients is becoming so widespread; people are now needlessly dying with no treatment. The adoption of biosocial model; with Medically Unexplained Symptoms, Bodily Dysfunction Disorder, are masking all known diseases like cancer, diabetes, Lymes, Lupus, Thyroid and ME to name just a few.

I had two uncles that had rarely visited the Doctors who have suffered by this and have died after being refused treatment or tests. Both told that they were imagining the severity of the pain. Both found the cause too late, both could have been saved. We hear this all the time with cancer; those numbers are collated, but there are other illnesses and diseases that suffer this fate too and need our support?

Yet a well know group physiatrists and psychologists insist that doctor’s time is wasted by patients that imagine the pain is more profound than it is? These professionals do not learn the fate of those they have dismissed. This is where the trouble begins. We need those professionals to be accountable for their theories, and aware of the damage they have done?

They also seem unaware of the new line of research tracking down our bodies many mechanisms, and how they control our many ecosystems. They seem convinced that they can see another person’s pain, just by looking at them? That they can tell what is going on deep inside a patient’s body without testing, investigating, or spending time to listen to the symptoms and what they tell us?

It is society’s responsibility to make the difference? But our apathy based on the enormous respect we give the medical profession; that they would “do no harm” and are overseen by stringent controls for safety. So we step back, until it happens to us? How many people, who looked happy, and healthy, died the next day? How many young sports people die sudden deaths? Illness does not hang a sign on your face to tell you what is going on deep within your body. Nor do our emotions save us from illness or cause our deaths. Happy people do die. Feeling young, being fit and looking healthy, death has no regard, it will carry you off regardless!

No up-to-date figures are kept of how many adults or children have ME/CFS, no figures of misdiagnosis, or treatments that have helped like Vitamin B12. No SPEC scans that can show the damage. No figures are kept even in trials of the patients that became bed or housebound, after PACE trial like treatments, including those young children. Nothing is done about the false allegations of FII. No figures on how many children taken from loving homes and what happens to them. No autopsy’s to follow the disease and learn. These are stark failings, don’t you think?

For those doctors; who were not fooled by the control the body with your thoughts approach, were sent off to the GMC, who happily chopped of their heads - figuratively speaking. The GMC allowed this to continue, why? Why are parents accused of FII with no indication that is the case? They are given little to no support after a gruelling and stressful court hearing, and are coping with a chronic illness on their own.

These passive aggressive attitudes ripple through our society, so that it has become the normal thinking. They systematically take everyone down; patient, doctor, researchers, journalists and advocates of ME. They ridicule in public so that ME is not taken seriously. They don’t care who gets in their way, even good sound and solid science is brushed aside. Their ability to weave like a snake in our society has been made easy? You only have to look at the Judicial Review details, the many court cases, to see how far they as a collective are prepared to go, and still prepared to go. No matter what the courts say - NHS, GMC and our Government encourage this passive aggressive treatment. The House of Lords debates with countess Mar, heroically stating truths, bare whiteness to this too; spirituality sighted as the best medicine and the only support ME suffers deserve in 2017?

It did not matter if those they defaced, dehumanised were suffering. The more this collective got away with this passive aggressive behaviour, the more the weavers promoted those that could have, or should have, spoken out. Again you only have to look what happened when Philip Hammond wrote a piece in the Private EYE on this subject.

This collective employ their chosen few, rightly believing catch the doctors early and just keep repeating mind over body and it will sink into the fabric of society. How many times do you go to the doctors to be asked are you anxious? Well yes doctor, I do feel anxious. I need my two jobs, I feel so unwell and I do not know what the flying fig is going on with my body. We have now so watered down the true meaning of anxiety, and muddled it up with good reasoning and protective concern.

They ridiculed patients in public or behind closed doors. They locked patients up and exercised them to death, and then they hide or gloss over the facts. It does not seem to bother them; that some of those were young children. Karina Hansen’s medical records are beyond words. Naomi Whittingtom and her family have put the truth out there for all to see. How the forceful physio can harm, I could write endlessly about the blindside of society. How many children are still hidden with no medical care or locked away? Lynn Gilderdale story hurts beyond endurance. Ean Proctor’s court case is fraught with inconsistencies by medical professionals that whitewashed over and never taken to task over the cover-up. Sophie Mirza treatment is sickening beyond belief. Clair Wade along with all the others children through ME history, will show you how detrimental NICE treatment is. But none of these heroes’ collective stories are news worthy apparently “it’s not like cancer”?

A lead paediatric researcher into ME tells us there are two arms of ME, One that can get better, and the other not? That is all the information she has? No reasoning to that statement? No data tests from previous trials show the damage that might be done? The ethics committee, just on this paediatrics say so, agreed we need to put young children through a FITNET program to exercise them unsupervised? To see which group are harmed? Not why this might be? I kid you not! The sad thing is there have been many such trials, and no good results? 1000s of children put through trials that tell us nothing?

Our not so NICE, are willing to wait for this trial on 700 children, to review their guidelines for all sufferers? Fluff a duck in cold bad weather. Even after the fiasco of PACE trial? We have tried very hard to stop these types of trials, but we are ridiculed as simpletons.

Can we trust them to be honest and true with their figures? Anyone who has read the history of the PACEgate will know the answer to that. We are still waiting for the results of another trial on children called SMILE, only it doesn’t make our kids smile. Do they have to report the decline in health of these children? Well their get out of jail card is that ME is a fluctuating illness that can from time to time make you hospitalised. The science proves otherwise. If you over exert past your bodies limit, your body deteriorates. However keep your body within its limit and you can live without deterioration, and even recover slowly. Turning this truth on its head any decline can be explained away even if the child becomes tube fed, catheterised, bedridden, it is just part of the illness? Is this ethical?

Research proves beyond doubt that physical and mental activity harms the body of an ME patient. So you would expect NICE, NHS and the ethic committee; that passed the FITNET-NHS trial, will be keeping a close eye on the data? Engage with the parents and children, make sure they are safe? Make sure the Helsinki agreement is upheld and ultimately be held responsible for their actions, along with the paediatric researcher’s team? You would be wrong!

Parents are silenced; accused of FII, the courts won’t let you tell your truth. Your children are dropped from trials as recovered. Or as with SMILE trial, parents were accused in a passive aggressive manor that they did not want their children going through the treatment. When in fact the children were too poorly to continue. They are then left unsupported medically and silenced. NICE do not listen to the patients voice. Just PANTS science?

The group of weavers tell you; you must be progressive and intelligent to understand the workings of the mind. You must believe, but most of all you must not test the cloth they have so expertly woven, and they themselves and their friends have tested. The results of the trial you would not understand, because it is far too complicated. They explain they were adrift for a while but they always knew where they would dock, you vexatious lot. The most important thing is not to look at the data; it must be hidden at all cost! TAX payers have paid dearly for the cover-up.

ME treatment can be equated to having a broken infected leg with diabetes and told to walk, close your mind to the pain, be happy and start to live. Yes it is that bad.

You must not ask for an x-ray to show the damage done, because you will believe it? This would just show us your “illness beliefs”; we can lock you in silence for that. Deny the damage or we will not be nice to you, and you will not like us when we are angry! Would you trust this sort of treatment?

As far as infection, they tell us - what a ridiculous idea? Inflammation we can explain that, we have made it as clear as mud! Not that we understand it anyhow? Who would do that in their right mind? What doctor would do such a thing? It’s not as though that has ever happened in the past? MS, crohn's disease, Epileptic fits, Stomach ulcers, coeliac, Alzheimer’s, Autism the list is endless and still we think with just will power, we can control these conditions? They are purely behaviour? Mind control?

Energy production, and metabolomics, mitochondrial difficulties, DNA what silly nonsense they say?

The weft and warp of the cloth is Mass Hysteria and mind control.

Mass Hysteria may be all the fault of the woman. They suffer this in greater prevalence the same as MS. Women are discriminated within the medical profession, we know that. More women suffering maybe down to the fact autoimmunity is different between the sexes. It is to do with X chromosome amongst other things. Anyhow if their theory “Mass Hysteria” was true more ME sufferers would be seen in highly stressed areas of the world? We don’t see that. We do see outbreaks similar to infection or around infectious diseases throughout the world. Take the Ebola outbreak for instance Dr. Abudul El-Sayed is treating one doctor, who is still suffering after recovery from initial infection, and his bloods have come back clear.

The mind is where the weavers got a grip on the illness. They manufactured that the mind controls the brain, which controls the body? How or why they reach this conclusion is uncertain, but apparently it is beyond any doubt?

Science would disagree and say there is a large amount of doubt. Our thoughts are just that, thoughts; some innate, some subconscious and some conscious decisions. You cannot put them all together and have one control box. Experience and behaviour are only part of our complexity of control. We also are only beginning to understand the willed action and how this can be disturbed by damage to the basil ganglia, at the prefrontal cortex which we know facilitates willed action. We are only just beginning to understand this innate and willed process and how this affects us.

Within our gut sits a large neuro transmitter with massive amounts of serotonin, a collection of nerve bodies the size of a cat’s brain, how does that affect our reactions and defence against autoimmune, infection and our moods? Who knows?

We can cope with adverse situations by a positive attitude, but to change our whole body’s complexities, who are we kidding? Headless chickens spring up in my mind!

So where does this all leave people with ME? Flying our Polka-Dot-PANTS in the wilderness for now. But with your help things could change. NICE can be made to listen to good science and not PANTS science.

Our complex dots are ridiculed, discriminated against, demoralised, defaced and dehumanised in public, and we need to change that, with your support we can.

I don’t want anyone; let alone a young and venerable child to feel they have to be a super hero in order to receive treatments their body’s need. It is everyone’s right as a human, to be treated with respect.

I don’t want research carried out that has known damage. The Helsinki agreement needs to be upheld, it is there for good reason!

If you feel the same I would ask:

Are you brave enough to stand up against fabricating “Illness Beliefs”?

To stand up for disability, difference, suffering and hope?

Stand up for good doctors who “do no harm”

Stand up for good researchers that believe in open and honest science, and that have and still are proving all the physical dots of ME?

Stand up for the best care for patients so that our NHS gives the best advice and treatment?

Are you brave enough to stand up and proud against NICE?

Are you brave enough to Fly Polka-Dot-PANTS for ME?

Please put the pants as your status for one week to show your support as NICE debate ME future and that of 700 children that suffer the indignity of PANTS science